Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 , Boy, you sound hypO to me. When was the last time you had labs done? Even if they're in normal range, they could be too low for your body. Do you have the exact numbers with you? You could post them and maybe someone would have some insights. I know for me, normal ranges are too low. I always feel " normal " when the labs show me a tad hyper. All the symptoms you listed are hypo symptoms, so you should definitely look into it. What meds are you on besides pred. ? Kristi (unknown) > Hello to everyone. Hope all is well. I'm writing this in > desperation, seeking answers or at least suggestions my doc wont give > me. I was on a high dose of prednisone for my eyes for several > months for my eyes and was gradually tapered off a couple months > ago. Since then, I have been having fatigue, joint pain, hair loss, > and (ack!) decreased libido. I thought maybe my thyroid was going > out of whack again, but my tests came back normal. STILL, I wonder > if there is some other sort of hormonal imbalance going on, perhaps > brought on by being on the prednisone? My doc isn't really LISTENING > to me. He's saying the joint pain is just previous pain I had that > I " forgot " about while being on the prednisone and now that I'm off, > my " memory " is coming back and my body isn't used to dealing with the > pain now but it will get better. He says my hair falling out is > simply hereditary, and afterall, I'm " getting older. " I'm only 35! > I haven't even started menopause yet! Besides that, I have a license > in cosmetology and know that hair does thin out for some people as we > get older, but gradually, not over the course of a couple months. > This is soooo frustrating because I KNOW when something different is > going on with my body, I wouldn't go in to see the doc if I didn't > really think I needed to, and the doc is practically laughing in my > face, no he DID laugh in my face and suggested a wig (all in good > humor, of course) and then he suggested if the joint pain gets worse, > come back in, otherwise, he'll see me for another thyroid check in 6 > months. He never bothered to suggest a hormone imbalance not > particularly related to the thyroid. Anyway, my question is, has > anyone else here gone through anything like this after taking > prednisone? Perhaps it is something coincidental, NOT caused by > being on and then off the prednisone, but I do believe it is some > sort of hormone imbalance nonetheless. Is there ANYONE here who can > relate? Any responses will be very much appreciated. Thanks. > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hi Machelle, It's well known that TSH can take many months, even years, to rise after you've been hyperthyroid, particularly if you have high titers of TSH receptor antibodies. Your levels of free thyroid hormone, FT4 and FT3 measure how much thyroid hormone is available to your cells. These levels indicate what your true thyroid status is. TSH is a pituitary hormone that reflects thyroid function in normal people. Studies show that the pituitary has TSH receptors and recognizes these antibodies as if they were TSH and thinks you have enough. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 In a message dated 11/5/2002 5:24:03 PM Pacific Standard Time, tazbaby@... writes: > Sure we have a disability and it is treatable might take sometime > but you will get there guess it all depends one how you decide to > treat it, I have graves just like my mom did when I was little. I > had decided to go with RAI and I do think it was the right thing to > do I have nodules 4 times larger than normal. Now the nodules are > gone and I was put on ptu after that 2x 50mg 3 times a day now I am > on 2x 50mg 2 times a day. My T3 was at last visit 135.45, TSH3GEN > was <0.018 L, TSH, Sensitive <0.03 L. T4 Free 1.170. Now I started > out pretty high they say I will probably have to have another dose > of RAI since my number are so low and have not changed on the > TSH3GEN that it might be needed I still dont know why but will be > asking on Thursday when I go to the Dr again. The only thing that I > dont like about what I have decided to treat this with is that I > have gained all this weight and cant hardly walk for very long I > also take Inderal 2x a day 40 mg for my heart rate. Well I can > understand what is happening to me now I am becoming hypo right well > when does it change and get to where I can loose this weight I just > can't take it anymore it is driving me crazy 50+ lbs since July is > alot. I hear all these things some of you are doing and complaining > about, well this is a treatable disease and I know it I would not > quit my job because of it I am a cashier nothing important just on > my feet all day for 91/2 hrs but dont complain about it much. I > dont feel this is life threatening and some of you do so is there > something I am missing or what. You guys talk about getting money > because of the disabilities act well this does not stop you from > having a job or doing it, I just dont get some of you why would you > need to quit your job to get things better. Well I could go on and > on but would probably piss some of you off but I will stop here > maybe next time > > Thanks > Machelle Hi Machelle, I think your view is the general perception and I'm not angry that you ask why some of us think we have to quit our jobs to feel better. My job was unusually stressful. I'm a financial programmer and have been consulting for several years. I live in Washington state and was working in Texas for the past year. I worked crazy hours--sometimes in excess of 90 hours per week! I went for as long as 2 months without seeing my husband. It got to the point where I just could not sort out my thoughts well enough to do my job. I would have to track down clients, turn their fragmented ideas of what they wanted into a workplan that I would then follow to write a program. The last few months I worked, I would forget what I was doing in the middle of a task, my thoughts were jumbled, my designs didn't make sense, I'd have to redo the simplist things 10 times because I kept screwing up. If I had stayed there, I probably would have been fired after a few more months of mistakes. My doctor told me that I couldn't keep doing this to myself and I needed to take some time to get better. I needed to be home where I could be monitored and receive proper treatment. Unfortunately for me, the work I do is concentrated in Houston and New York. To get a job here, I'm having to learn to do something else. I don't think that I'm permanently disabled. I hope to be back to work in a few months. However, I think that my situation satisfies all the requirements of my disability policy. This is why I took the policy out--in case something happened to me and I was out of work for a while. I hope I've answered your questions. I haven't given up because of a diagnosis, but I do need time to get better. Peace, Tori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2003 Report Share Posted April 20, 2003 It looks really cute for anyone with school-age girls. > Eloise is a six year old ornery rich girl who lives at the Plaza > Hotel. They are very fun books. The movies looks to be fairly > accurate to the book. > http://disney.go.com/wonderfulworld/eloise/index.html > We intend to watch it. Leggs Thanks, Leggs! We have ALL the Eloise books. I'll tell Sophie. Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2003 Report Share Posted April 20, 2003 > Thanks, Leggs! We have ALL the Eloise books. Salli, Somehow I thought you might! :-) Leggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 it is an old wives tale taking castor oil with sure give you diarrhea though and you'll spend the day in the bathroom or at least not far from it, lol... HUGS, ROBIN, NY Age- 41 TTC#4 - OPEN RNY 10-18-02 378/246/170??? DR.EDWARD HIXSON SARANAC LAKE, NY Mom to: & 7 1/2 year twin boys and Madison age 4 1/2 yrs. Miscarraige August 2001 Miscarraige August 2003 Married to Pup: 15 years this Halloween : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 it is an old wives tale taking castor oil with sure give you diarrhea though and you'll spend the day in the bathroom or at least not far from it, lol... HUGS, ROBIN, NY Age- 41 TTC#4 - OPEN RNY 10-18-02 378/246/170??? DR.EDWARD HIXSON SARANAC LAKE, NY Mom to: & 7 1/2 year twin boys and Madison age 4 1/2 yrs. Miscarraige August 2001 Miscarraige August 2003 Married to Pup: 15 years this Halloween : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 it is an old wives tale taking castor oil with sure give you diarrhea though and you'll spend the day in the bathroom or at least not far from it, lol... HUGS, ROBIN, NY Age- 41 TTC#4 - OPEN RNY 10-18-02 378/246/170??? DR.EDWARD HIXSON SARANAC LAKE, NY Mom to: & 7 1/2 year twin boys and Madison age 4 1/2 yrs. Miscarraige August 2001 Miscarraige August 2003 Married to Pup: 15 years this Halloween : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hi, Sorry about that........... Aussie for 'big note yourself'.......be proud etc etc........... People here tend to talk about someone having a 'big head' when they think a bit of themselves........or say 'hope they don't get a big head' - after some big achievement............... and so it sort of tickled my fancy that you will have every reason to talk about your big head - as you will truely have one............. and if like the rest of us - will not stop talking about your new hip and what it is etc for a couple of years anyway......... Big smile.............. Edith................ > At 08:49 PM 10/13/2003 +1000, you wrote: > >.Just think you will be able to skite a big head now and > >no one can argue that point..... > > Edith, > > Help!! Skite???? Translate or explain please for us up-overs (wouldn't > that be the opposite of down-unders?) > > Cindy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 In a message dated 11/16/03 6:26:15 PM Eastern Standard Time, cgronbach@... writes: > dept. She said she couldn't recommend any particular anesthesiologist. I > told her I wasn't looking for a recommendation, just wanted to be scheduled > with someone good. She said she would schedule me with one of her > favorites, and it was a great experience. You may be able to do the same, > or at least say you don't want that particular one... > > Cindy > C+ 5/25/01 and 6/28/01 Thanks, Cindy. I have a close friends who is an anesthesiologist and he will call the chief in Sarasota and talk with him. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2004 Report Share Posted March 6, 2004 Hi ine The drive was less than 200 miles and we took a scenic route taking nearly 3 hours. It was no problem at all. I sat in the front passenger seat and had plenty of leg room. I did lower somewhat the back rest. It also helped, I think, that the seats were leather as it was easier to slide into a comfortable position, and that it was a high-seated vehicle (BMW X5) making it very easy to mount a seat. Getting out was also dead easy. I hope you find the drive comfortable too. Good luck with your 2nd resurfacing. Dan * +44 (0)7974 981-407 * +44 (0)20 8501-2573 @ dan.milosevic@... _____ From: wimpybear2003 Sent: 06 March 2004 22:08 To: surfacehippy Subject: (unknown) Hi Dan Thank you for your very detailed posting. I get my second hip resurfaced next Thursday, and your diary helped to prompt what I might hope for. One question: how did you find the drive to your sisters? I will be being driven from Birmingham to Hampshire? I hope your recovery continues to go so well. ine > > Dear Surfacehippies > > This may turn out to be a long message/post, so I'll divide it into various headings. I’ll be posting snapshots as well †" check the Photos link on the left side of the surfacehippy home page. > > Facts > > I had my left hip resurfaced on Monday, 16th February 2004, at St. Cross Hospital in Rugby, Warwickshire, United Kingdom. The operation was performed by Mr. Krikler. The procedure was done on the NHS (National Health Service), or free of charge. > > Chronology > > Sunday, 15/02/04 Checked in St. Cross's Cedar Ward; met Harry who is also a 53-year old with a left hip due for resurfacing by Mr Krikler; Harry is very fit) I carry some 8 pounds of excess weight round my waist) > > Monday, 16/02/04 Agreed with anaesthetist to have spinal anaesthetic (like epidural for women in birth); Mr Krikler was happy to provide a " running commentary " > > At approx. 12:00 taken to pre-op theatre room where spinal was applied > > Apparently was taken to op theatre where Mr Krikler started the incision and I mentioned that I could feel it - he asked the anaesthetist to apply general anaesthetic. I do not recall this exchange. I understand that the op lasted 1 hour and 45 min. Mr Krikler said that the hip was very stiff and that I had very hard bones. It appears a bit more work than usual. He fitted a Cormet device with a 48mm cup on femoral head. > > At about 16:30 I was awake and back at the Cedar ward. > > A couple of hours later Mr Krikler saw Harry and me (Harry was operated after I was and his op lasted 1.15, I understand). By then the small of my back was quite uncomfortable and I asked Mr Krikler if it would be OK to turn on my 'good' side (non-operated right). He said that'd be OK (many nurses were later surprised by this - I guess they are still more familiar with the THR post-operative procedure which prohibits sleeping on your side, or crossing legs, for months, I understand) > > Spent the night mostly awake; did not use PCA (Patient Controlled Analgesia) - morphine pump to you and I - as the discomfort was bearable (I have to stress here that I was not playing macho, but that I have extremely high pain threshold and went through years of OA with bone-on-bone and a cyst without ever taking a single pain killer); passed water 4 times (nearly a pint each time?!?) and sat-up on the bed to wee (I could never do it using the 'goose' bottle lying down in bed); constant sitting-up and fidgeting led to some leakage and oozing from the incision which got redressed 3 times that night; all-in-all not too bad a night. > > > Tuesday, 17/02/04 Day 1 - is how the hospital staff refer to the day after the op; given a 'Zimmer walking frame at about 08:00 (after breakfast) and told to apply full weight bearing on the operated leg/hip > > Walked round the Ward and to the main corridor all the way to the lifts where use of mobile phones is permitted; phoned friends and loved ones to inform them that all's OK; couldn't find a place to connect my laptop (rather found a connector but the hospital switchboard could not enable it for external calls to an ISP - however, this week a new cable system went live there and each bed will have cable TV, telephony [outgoing only, I understand] and full internet access); alternated the day between walking, laying in bed reading an obscure book and talking to Harry and the other 4 patients in our room; had bowel movement and used toilet. > > > Wednesday, 18/02/04 Day 2 - had a shower in the bathroom; no problem washing both legs; could see bits of bruising on my bottom; very little swelling. > > Told that I have a 9-10 " incision/scar (22.5 - 25 cm); not bothered by that; it is healing beautifully. > > Harry and I are given 2 walking sticks/canes each cut to our size; we start walking with these; usual destination: outside the lifts in the main corridor; spending a fortune on mobile calls; after an hour I drop one stick/cane and use one only (I'd like to stress here - mainly for our Yankee friends - that one is free to walk round and explore as we do not have the culture of suing the hospital should we stumble, fall and injure ourselves; it is pretty much left to the patient to be sensible; I always informed the duty nurse when I went for a walk, especially at night when I couldn't sleep; but I appreciated the unrestricted, yet caring, environment I was in). > > The continuous walking, interspersed with periods of rest/sleep/reading appear to have speeded-up the healing tremendously - both the bruising and the swelling are fast disappearing. > > Made a mistake of not asking for a sleeping pill and spent most of the night awake but without any pain. > > > Thursday, 19/02/04 Day 3 - Physiotherapist gives us (Harry and I) the steps (up and down) and the platform test (up and down) with one cane/stick - we pass and are ready to go home. > > Blood test shows our INR (International Normalcy Ratio) for blood coagulation is too low at 1.2 and 1.4 respectively for myself and Harry; the hospital decides not to release us until we reach the accepted INR window of 1.5 - 2.5 (apparently, if our blood coagulates faster that 1.5 times the blood of a normal person, i.e. the range between 1.0 and 1.49, we are at risk of DVT of sorts where a thrombocite can get lodged in our lungs causing sometimes deadly pulmonary thrombosis; if, however, our blood coagulates slower than 2.5 times that of a non-operated person who moved round normally, we are at risk of suffering bleed which could be very difficult to stop and even fatal if internal and unobserved); at St. Cross's hospital, or maybe even at that Health Trust, the DVT is dealt with using Warfarin tablets (also known as rat poison as that what it is commonly used for). > > Mr Krikler visits us and I take snapshots - I hope I'll be able to post these. > > Nicola, the occupational therapist, is moving heaven and earth to arrange all the necessary equipment for me when I'm released - there are peculiar problems as I am way out of my area (I live in North East London, some 120 miles south-east of Rugby), and I shall be staying at my sister's place in Essex, another 50 miles east from my home. Nicola is trying to arrange through the local social services for raised toilet seat, bed mats, raised chairs, bath boards (to enter a bath tub safely), grabbers, long shoehorns etc. to be provided by one Health Trust, via another one where I live in the third one where I'll be staying - ah the vagaries of bureaucracy. > > > Friday, 20/02/04 Day 4 - failed the test again; Warfarin dosage upped to max. > > > Saturday, 21/02/04 Day 5 - failed again; only managed to get the ratio to 1.49; Harry is allowed to go home for the night as he lives only 7 miles away. > > I continue my 15 min walks round hospital complex/park at least twice daily without a cane or stick which I carry in my arms but do not use. I regret not bringing my car to the hospital - I could have driven it already on Day 3 as it is an automatic and given that in the UK the steering column is on the right and I had my left hip operated, I could have driven my car without any problems for, say, 3 hours. > > > Sunday, 22/02/04 Day 6 - finally passed my INR test (barely, with 1.51); in the afternoon my daughter and her boyfriend gave me a lift back to my sister's place. > > > 22/03/04 - 29/02/04 Daily - walks approx. 1 mile without any aides. > > Bruising has nearly all disappeared; there's no swelling; once a day, usually before going to bed, I take 2 Paracetamol tablets and 1 Ibuprofen tablet - these are meant to be pain killers and anti- inflammatory in their actions; the latter I welcome, the former I do not need, but I do want to be a 'good patient' > > I can do most things without a major inconvenience - dressing and undressing; using the toilet; walking; using the stairs; putting on/off left sock & shoe; washing/drying left foot etc. > > > 01/03/04 †" 06/03/06 Moved back home; I’m using my bath shower now; I no longer wear a dressing/plaster over the scar (Mr Krikler used subcutaneous self-dissolving stitches †" the 9-10†incision has fully healed). > > I’ve been driving my car for the last 6 days †" no problems in driving it, getting in/out, etc. > > Went to Central London †" the usual Friday lunchtime drinks with pals †" I went there unaided (no walking stick/cane) using public transport (bus and London Underground, or Tube as we call it). Again, no problems using any of these means of transport. > > Comments > Leg length > > Mr Krikler explained the mechanics of the procedure in detail; my leg was 1.5 cm shorter; once the bio-physics of the pelvis-to-foot is clear and the resurfacing procedure is factored in, it is clear to me why the resurfacing procedure can do very little regarding leg length (mine looks OK now, but I'll have to wait until my gait and posture are corrected and straight before I can establish if there'll be a discrepancy) while THR can be much more effective in mitigating leg length. That's about the only advantage that I could see that THR may have over resurfacing. > > Mobility > > Extremely high extremely early - I'm absolutely impressed. > > Recovery / rehabilitation > > Unbelievably fast and painless (for me at least). However, I realise now that the operation is less than 50% of the solution - the larger part is recovery/rehabilitation. > > ROM > > Could not have imagined that the range of movement would be restored to such a high level so quickly. I said, probably too optimistically, to Mr Krikler that I plan to come for a 6-week check- up on my Honda Hornet to Rugby (ha thought I was mad and he is a biker too). > > My final challenge †" to tie the shoelace on my left foot/shoe. I hope I’ll be able to do that in a few weeks time. Standing on my operated leg, with my good leg in the air (crane-like position), I not a problem but I lack the balance I have when I stand on my ‘good’ leg. > > Blood coagulation risks & management > > Probably the least impressive of the otherwise superb NHS (or, at least that particular Health Trust). Two of us were kept in valuable beds for 3 days - the only thing that happened throughout these 3 days was the dispensing of the correct dosage of Warfarin in the evening and a subsequent INR test in the morning. I'm certain that could have been done in the local surgery / health centre where the patient is based. > Thanks & appreciation > Where do I start? Mr Krikler for his wonderful manner and style with patients. He answered every question without ambiguity, without use of a patronising tone, with the patience that professionals have to have when they're dealing with a layman. The fact that he was nearly invisible and that he made himself appear accidental in this process, helped reassure me, and I suppose other patients of his, that this is a routine op. By the way, Mr Krikler has performed 330+ resurfacings using Cormet in the last 8+ years. If you ask him, he'll tell you openly about the 3-4 cases that needed revisions and why. He does also perform this procedure privately - I understand that the package costs £9,000.00 (US$16,200.00 at 1.8 exchange rate) all inclusive (of course, there's the added travel costs for our USA friends). Considering that the Cormet device costs some £2,000.00, I believe this is very good value for money. Admittedly, it is slightly more expensive than DeSmet in Ghent, Belgium, but we might be splitting hairs here. > > I must mention Safi, a Ward Nurse who appears to be quietly running the show. She is a perfect example of a person who gains respect through her actions and deeds. Her dedication, application, thoroughness, devotion and professionalism were a sight to watch. Luckily, she was given a student nurse to teach as well - the student was in perfect hands and would learn the profession well by being tutored by Safi. > > Nicola, who joined this site and offered to help with advice, is one of these people for whom no problem is unsolvable. One felt safe if she said she would look into something. I can't thank her enough. > > There were numerous staff that were ever so eager to help - I'll mention Ivan (from Zimbabwe, if I remember correctly) and Riki (from Zambia, I believe). These guys were there throughout the long night shift and would respond immediately if you pressed the buzzer - you could have tea at any time of day or night. Whatever you needed, they provided it. > > Lastly, it would be unfair if I did not mention and thank all the other staff at St Cross hospital. This is a nice hospital with diligent and conscientious staff that look well after their patients. Even the food was nice. > > I must finish by mentioning the NHS - this is for the Brits - and stress that anybody who wants to abolish it or plans to privatise it is either insane or deliberately criminal. We have institutions for both types. And for the unfortunate Yanks who have to fork out personal cash for the op - consider strongly Mr Krikler and St Cross in Rugby (although Mr Krikler may suggest another hospital where he operates also). > > I'll shut up now. I hope to have more good news in 4 weeks time when I'm due to see Mr Krikler for a check-up. > 3 +44 (0)7974 981-407 > * +44 (0)20 8501-2573 > @ dan.milosevic@i... > * 1A Cypress Grove > Hainault > ILFORD > Essex > IG6 3AT > United Kingdom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 dear dan i am on an nhs waiting list for resurfacing (doing both six weeks apart) - your letter was brilliant - such an inspiration... i think i should be done this year and you have helped allay some fears.... it is important to know what happens to others good luck and lots of love in your recovery jane (north east wales/shropshire border) xxx > > > > Dear Surfacehippies > > > > This may turn out to be a long message/post, so I'll divide it into > various headings. I’ll be posting snapshots as well †" check the > Photos link on the left side of the surfacehippy home page. > > > > Facts > > > > I had my left hip resurfaced on Monday, 16th February 2004, at St. > Cross Hospital in Rugby, Warwickshire, United Kingdom. The operation > was performed by Mr. Krikler. The procedure was done on the > NHS (National Health Service), or free of charge. > > > > Chronology > > > > Sunday, 15/02/04 Checked in St. Cross's Cedar Ward; met > Harry who is also a 53-year old with a left hip due for resurfacing > by Mr Krikler; Harry is very fit) I carry some 8 pounds of excess > weight round my waist) > > > > Monday, 16/02/04 Agreed with anaesthetist to have spinal > anaesthetic (like epidural for women in birth); Mr Krikler was happy > to provide a " running commentary " > > > > At approx. 12:00 taken to pre-op theatre room where spinal was > applied > > > > Apparently was taken to op theatre where Mr Krikler started the > incision and I mentioned that I could feel it - he asked the > anaesthetist to apply general anaesthetic. I do not recall this > exchange. I understand that the op lasted 1 hour and 45 min. Mr > Krikler said that the hip was very stiff and that I had very hard > bones. It appears a bit more work than usual. He fitted a Cormet > device with a 48mm cup on femoral head. > > > > At about 16:30 I was awake and back at the Cedar ward. > > > > A couple of hours later Mr Krikler saw Harry and me (Harry was > operated after I was and his op lasted 1.15, I understand). By then > the small of my back was quite uncomfortable and I asked Mr Krikler > if it would be OK to turn on my 'good' side (non-operated right). He > said that'd be OK (many nurses were later surprised by this - I guess > they are still more familiar with the THR post-operative procedure > which prohibits sleeping on your side, or crossing legs, for months, > I understand) > > > > Spent the night mostly awake; did not use PCA (Patient Controlled > Analgesia) - morphine pump to you and I - as the discomfort was > bearable (I have to stress here that I was not playing macho, but > that I have extremely high pain threshold and went through years of > OA with bone-on-bone and a cyst without ever taking a single pain > killer); passed water 4 times (nearly a pint each time?!?) and sat- up > on the bed to wee (I could never do it using the 'goose' bottle lying > down in bed); constant sitting-up and fidgeting led to some leakage > and oozing from the incision which got redressed 3 times that night; > all-in-all not too bad a night. > > > > > > Tuesday, 17/02/04 Day 1 - is how the hospital staff refer > to the day after the op; given a 'Zimmer walking frame at about 08:00 > (after breakfast) and told to apply full weight bearing on the > operated leg/hip > > > > Walked round the Ward and to the main corridor all the way to the > lifts where use of mobile phones is permitted; phoned friends and > loved ones to inform them that all's OK; couldn't find a place to > connect my laptop (rather found a connector but the hospital > switchboard could not enable it for external calls to an ISP - > however, this week a new cable system went live there and each bed > will have cable TV, telephony [outgoing only, I understand] and full > internet access); alternated the day between walking, laying in bed > reading an obscure book and talking to Harry and the other 4 patients > in our room; had bowel movement and used toilet. > > > > > > Wednesday, 18/02/04 Day 2 - had a shower in the bathroom; no > problem washing both legs; could see bits of bruising on my bottom; > very little swelling. > > > > Told that I have a 9-10 " incision/scar (22.5 - 25 cm); not bothered > by that; it is healing beautifully. > > > > Harry and I are given 2 walking sticks/canes each cut to our size; > we start walking with these; usual destination: outside the lifts in > the main corridor; spending a fortune on mobile calls; after an hour > I drop one stick/cane and use one only (I'd like to stress here - > mainly for our Yankee friends - that one is free to walk round and > explore as we do not have the culture of suing the hospital should we > stumble, fall and injure ourselves; it is pretty much left to the > patient to be sensible; I always informed the duty nurse when I went > for a walk, especially at night when I couldn't sleep; but I > appreciated the unrestricted, yet caring, environment I was in). > > > > The continuous walking, interspersed with periods of > rest/sleep/reading appear to have speeded-up the healing > tremendously - both the bruising and the swelling are fast > disappearing. > > > > Made a mistake of not asking for a sleeping pill and spent most of > the night awake but without any pain. > > > > > > Thursday, 19/02/04 Day 3 - Physiotherapist gives us (Harry > and I) the steps (up and down) and the platform test (up and down) > with one cane/stick - we pass and are ready to go home. > > > > Blood test shows our INR (International Normalcy Ratio) for blood > coagulation is too low at 1.2 and 1.4 respectively for myself and > Harry; the hospital decides not to release us until we reach the > accepted INR window of 1.5 - 2.5 (apparently, if our blood coagulates > faster that 1.5 times the blood of a normal person, i.e. the range > between 1.0 and 1.49, we are at risk of DVT of sorts where a > thrombocite can get lodged in our lungs causing sometimes deadly > pulmonary thrombosis; if, however, our blood coagulates slower than > 2.5 times that of a non-operated person who moved round normally, we > are at risk of suffering bleed which could be very difficult to stop > and even fatal if internal and unobserved); at St. Cross's hospital, > or maybe even at that Health Trust, the DVT is dealt with using > Warfarin tablets (also known as rat poison as that what it is > commonly used for). > > > > Mr Krikler visits us and I take snapshots - I hope I'll be able to > post these. > > > > Nicola, the occupational therapist, is moving heaven and earth to > arrange all the necessary equipment for me when I'm released - there > are peculiar problems as I am way out of my area (I live in North > East London, some 120 miles south-east of Rugby), and I shall be > staying at my sister's place in Essex, another 50 miles east from my > home. Nicola is trying to arrange through the local social services > for raised toilet seat, bed mats, raised chairs, bath boards (to > enter a bath tub safely), grabbers, long shoehorns etc. to be > provided by one Health Trust, via another one where I live in the > third one where I'll be staying - ah the vagaries of bureaucracy. > > > > > > Friday, 20/02/04 Day 4 - failed the test again; > Warfarin dosage upped to max. > > > > > > Saturday, 21/02/04 Day 5 - failed again; only managed to > get the ratio to 1.49; Harry is allowed to go home for the night as > he lives only 7 miles away. > > > > I continue my 15 min walks round hospital complex/park at least > twice daily without a cane or stick which I carry in my arms but do > not use. I regret not bringing my car to the hospital - I could have > driven it already on Day 3 as it is an automatic and given that in > the UK the steering column is on the right and I had my left hip > operated, I could have driven my car without any problems for, say, 3 > hours. > > > > > > Sunday, 22/02/04 Day 6 - finally passed my INR test > (barely, with 1.51); in the afternoon my daughter and her boyfriend > gave me a lift back to my sister's place. > > > > > > 22/03/04 - 29/02/04 Daily - walks approx. 1 mile without any > aides. > > > > Bruising has nearly all disappeared; there's no swelling; once a > day, usually before going to bed, I take 2 Paracetamol tablets and 1 > Ibuprofen tablet - these are meant to be pain killers and anti- > inflammatory in their actions; the latter I welcome, the former I do > not need, but I do want to be a 'good patient' > > > > I can do most things without a major inconvenience - dressing and > undressing; using the toilet; walking; using the stairs; putting > on/off left sock & shoe; washing/drying left foot etc. > > > > > > 01/03/04 †" 06/03/06 Moved back home; I’m using my bath > shower now; I no longer wear a dressing/plaster over the scar (Mr > Krikler used subcutaneous self-dissolving stitches †" the 9- 10†> incision has fully healed). > > > > I’ve been driving my car for the last 6 days †" no problems in > driving it, getting in/out, etc. > > > > Went to Central London †" the usual Friday lunchtime drinks with > pals †" I went there unaided (no walking stick/cane) using public > transport (bus and London Underground, or Tube as we call it). > Again, no problems using any of these means of transport. > > > > Comments > > Leg length > > > > Mr Krikler explained the mechanics of the procedure in detail; my > leg was 1.5 cm shorter; once the bio-physics of the pelvis-to-foot is > clear and the resurfacing procedure is factored in, it is clear to me > why the resurfacing procedure can do very little regarding leg length > (mine looks OK now, but I'll have to wait until my gait and posture > are corrected and straight before I can establish if there'll be a > discrepancy) while THR can be much more effective in mitigating leg > length. That's about the only advantage that I could see that THR > may have over resurfacing. > > > > Mobility > > > > Extremely high extremely early - I'm absolutely impressed. > > > > Recovery / rehabilitation > > > > Unbelievably fast and painless (for me at least). However, I > realise now that the operation is less than 50% of the solution - the > larger part is recovery/rehabilitation. > > > > ROM > > > > Could not have imagined that the range of movement would be > restored to such a high level so quickly. I said, probably too > optimistically, to Mr Krikler that I plan to come for a 6-week check- > up on my Honda Hornet to Rugby (ha thought I was mad and he is a > biker too). > > > > My final challenge †" to tie the shoelace on my left foot/shoe. I > hope I’ll be able to do that in a few weeks time. Standing on my > operated leg, with my good leg in the air (crane-like position), I > not a problem but I lack the balance I have when I stand on my > ‘good’ leg. > > > > Blood coagulation risks & management > > > > Probably the least impressive of the otherwise superb NHS (or, at > least that particular Health Trust). Two of us were kept in valuable > beds for 3 days - the only thing that happened throughout these 3 > days was the dispensing of the correct dosage of Warfarin in the > evening and a subsequent INR test in the morning. I'm certain that > could have been done in the local surgery / health centre where the > patient is based. > > Thanks & appreciation > > Where do I start? Mr Krikler for his wonderful manner and style > with patients. He answered every question without ambiguity, without > use of a patronising tone, with the patience that professionals have > to have when they're dealing with a layman. The fact that he was > nearly invisible and that he made himself appear accidental in this > process, helped reassure me, and I suppose other patients of his, > that this is a routine op. By the way, Mr Krikler has performed 330+ > resurfacings using Cormet in the last 8+ years. If you ask him, > he'll tell you openly about the 3-4 cases that needed revisions and > why. He does also perform this procedure privately - I understand > that the package costs £9,000.00 (US$16,200.00 at 1.8 exchange rate) > all inclusive (of course, there's the added travel costs for our USA > friends). Considering that the Cormet device costs some £2,000.00, > I believe this is very good value for money. Admittedly, it is > slightly more expensive than DeSmet in Ghent, Belgium, but we might > be splitting hairs here. > > > > I must mention Safi, a Ward Nurse who appears to be quietly running > the show. She is a perfect example of a person who gains respect > through her actions and deeds. Her dedication, application, > thoroughness, devotion and professionalism were a sight to watch. > Luckily, she was given a student nurse to teach as well - the student > was in perfect hands and would learn the profession well by being > tutored by Safi. > > > > Nicola, who joined this site and offered to help with advice, is > one of these people for whom no problem is unsolvable. One felt safe > if she said she would look into something. I can't thank her enough. > > > > There were numerous staff that were ever so eager to help - I'll > mention Ivan (from Zimbabwe, if I remember correctly) and Riki (from > Zambia, I believe). These guys were there throughout the long night > shift and would respond immediately if you pressed the buzzer - you > could have tea at any time of day or night. Whatever you needed, they > provided it. > > > > Lastly, it would be unfair if I did not mention and thank all the > other staff at St Cross hospital. This is a nice hospital with > diligent and conscientious staff that look well after their > patients. Even the food was nice. > > > > I must finish by mentioning the NHS - this is for the Brits - and > stress that anybody who wants to abolish it or plans to privatise it > is either insane or deliberately criminal. We have institutions for > both types. And for the unfortunate Yanks who have to fork out > personal cash for the op - consider strongly Mr Krikler and St Cross > in Rugby (although Mr Krikler may suggest another hospital where he > operates also). > > > > I'll shut up now. I hope to have more good news in 4 weeks time > when I'm due to see Mr Krikler for a check-up. > > 3 +44 (0)7974 981-407 > > * +44 (0)20 8501-2573 > > @ dan.milosevic@i... > > * 1A Cypress Grove > > Hainault > > ILFORD > > Essex > > IG6 3AT > > United Kingdom > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Zoe I did no exercises/physic prior to the operation – my left hip’s condition prevented me from any sports and exercises. Dan * +44 (0)7974 981-407 * +44 (0)20 8501-2573 @ dan.milosevic@... _____ From: zoeezee Sent: 08 March 2004 21:22 To: surfacehippy Subject: (unknown) Dan Your diary was very interesting. It sounds like you had a possitive experience in Rugby. Thank-you for sharing this as it makes the future less worrying seeing the excellent progress you made so quickly. Did you do physio/exersize before alot to prepare? zoe > > Dear Surfacehippies > > This may turn out to be a long message/post, so I'll divide it into various headings. I’ll be posting snapshots as well †" check the Photos link on the left side of the surfacehippy home page. > > Facts > > I had my left hip resurfaced on Monday, 16th February 2004, at St. Cross Hospital in Rugby, Warwickshire, United Kingdom. The operation was performed by Mr. Krikler. The procedure was done on the NHS (National Health Service), or free of charge. > > Chronology > > Sunday, 15/02/04 Checked in St. Cross's Cedar Ward; met Harry who is also a 53-year old with a left hip due for resurfacing by Mr Krikler; Harry is very fit) I carry some 8 pounds of excess weight round my waist) > > Monday, 16/02/04 Agreed with anaesthetist to have spinal anaesthetic (like epidural for women in birth); Mr Krikler was happy to provide a " running commentary " > > At approx. 12:00 taken to pre-op theatre room where spinal was applied > > Apparently was taken to op theatre where Mr Krikler started the incision and I mentioned that I could feel it - he asked the anaesthetist to apply general anaesthetic. I do not recall this exchange. I understand that the op lasted 1 hour and 45 min. Mr Krikler said that the hip was very stiff and that I had very hard bones. It appears a bit more work than usual. He fitted a Cormet device with a 48mm cup on femoral head. > > At about 16:30 I was awake and back at the Cedar ward. > > A couple of hours later Mr Krikler saw Harry and me (Harry was operated after I was and his op lasted 1.15, I understand). By then the small of my back was quite uncomfortable and I asked Mr Krikler if it would be OK to turn on my 'good' side (non-operated right). He said that'd be OK (many nurses were later surprised by this - I guess they are still more familiar with the THR post-operative procedure which prohibits sleeping on your side, or crossing legs, for months, I understand) > > Spent the night mostly awake; did not use PCA (Patient Controlled Analgesia) - morphine pump to you and I - as the discomfort was bearable (I have to stress here that I was not playing macho, but that I have extremely high pain threshold and went through years of OA with bone-on-bone and a cyst without ever taking a single pain killer); passed water 4 times (nearly a pint each time?!?) and sat- up on the bed to wee (I could never do it using the 'goose' bottle lying down in bed); constant sitting-up and fidgeting led to some leakage and oozing from the incision which got redressed 3 times that night; all-in-all not too bad a night. > > > Tuesday, 17/02/04 Day 1 - is how the hospital staff refer to the day after the op; given a 'Zimmer walking frame at about 08:00 (after breakfast) and told to apply full weight bearing on the operated leg/hip > > Walked round the Ward and to the main corridor all the way to the lifts where use of mobile phones is permitted; phoned friends and loved ones to inform them that all's OK; couldn't find a place to connect my laptop (rather found a connector but the hospital switchboard could not enable it for external calls to an ISP - however, this week a new cable system went live there and each bed will have cable TV, telephony [outgoing only, I understand] and full internet access); alternated the day between walking, laying in bed reading an obscure book and talking to Harry and the other 4 patients in our room; had bowel movement and used toilet. > > > Wednesday, 18/02/04 Day 2 - had a shower in the bathroom; no problem washing both legs; could see bits of bruising on my bottom; very little swelling. > > Told that I have a 9-10 " incision/scar (22.5 - 25 cm); not bothered by that; it is healing beautifully. > > Harry and I are given 2 walking sticks/canes each cut to our size; we start walking with these; usual destination: outside the lifts in the main corridor; spending a fortune on mobile calls; after an hour I drop one stick/cane and use one only (I'd like to stress here - mainly for our Yankee friends - that one is free to walk round and explore as we do not have the culture of suing the hospital should we stumble, fall and injure ourselves; it is pretty much left to the patient to be sensible; I always informed the duty nurse when I went for a walk, especially at night when I couldn't sleep; but I appreciated the unrestricted, yet caring, environment I was in). > > The continuous walking, interspersed with periods of rest/sleep/reading appear to have speeded-up the healing tremendously - both the bruising and the swelling are fast disappearing. > > Made a mistake of not asking for a sleeping pill and spent most of the night awake but without any pain. > > > Thursday, 19/02/04 Day 3 - Physiotherapist gives us (Harry and I) the steps (up and down) and the platform test (up and down) with one cane/stick - we pass and are ready to go home. > > Blood test shows our INR (International Normalcy Ratio) for blood coagulation is too low at 1.2 and 1.4 respectively for myself and Harry; the hospital decides not to release us until we reach the accepted INR window of 1.5 - 2.5 (apparently, if our blood coagulates faster that 1.5 times the blood of a normal person, i.e. the range between 1.0 and 1.49, we are at risk of DVT of sorts where a thrombocite can get lodged in our lungs causing sometimes deadly pulmonary thrombosis; if, however, our blood coagulates slower than 2.5 times that of a non-operated person who moved round normally, we are at risk of suffering bleed which could be very difficult to stop and even fatal if internal and unobserved); at St. Cross's hospital, or maybe even at that Health Trust, the DVT is dealt with using Warfarin tablets (also known as rat poison as that what it is commonly used for). > > Mr Krikler visits us and I take snapshots - I hope I'll be able to post these. > > Nicola, the occupational therapist, is moving heaven and earth to arrange all the necessary equipment for me when I'm released - there are peculiar problems as I am way out of my area (I live in North East London, some 120 miles south-east of Rugby), and I shall be staying at my sister's place in Essex, another 50 miles east from my home. Nicola is trying to arrange through the local social services for raised toilet seat, bed mats, raised chairs, bath boards (to enter a bath tub safely), grabbers, long shoehorns etc. to be provided by one Health Trust, via another one where I live in the third one where I'll be staying - ah the vagaries of bureaucracy. > > > Friday, 20/02/04 Day 4 - failed the test again; Warfarin dosage upped to max. > > > Saturday, 21/02/04 Day 5 - failed again; only managed to get the ratio to 1.49; Harry is allowed to go home for the night as he lives only 7 miles away. > > I continue my 15 min walks round hospital complex/park at least twice daily without a cane or stick which I carry in my arms but do not use. I regret not bringing my car to the hospital - I could have driven it already on Day 3 as it is an automatic and given that in the UK the steering column is on the right and I had my left hip operated, I could have driven my car without any problems for, say, 3 hours. > > > Sunday, 22/02/04 Day 6 - finally passed my INR test (barely, with 1.51); in the afternoon my daughter and her boyfriend gave me a lift back to my sister's place. > > > 22/03/04 - 29/02/04 Daily - walks approx. 1 mile without any aides. > > Bruising has nearly all disappeared; there's no swelling; once a day, usually before going to bed, I take 2 Paracetamol tablets and 1 Ibuprofen tablet - these are meant to be pain killers and anti- inflammatory in their actions; the latter I welcome, the former I do not need, but I do want to be a 'good patient' > > I can do most things without a major inconvenience - dressing and undressing; using the toilet; walking; using the stairs; putting on/off left sock & shoe; washing/drying left foot etc. > > > 01/03/04 †" 06/03/06 Moved back home; I’m using my bath shower now; I no longer wear a dressing/plaster over the scar (Mr Krikler used subcutaneous self-dissolving stitches †" the 9-10†incision has fully healed). > > I’ve been driving my car for the last 6 days †" no problems in driving it, getting in/out, etc. > > Went to Central London †" the usual Friday lunchtime drinks with pals †" I went there unaided (no walking stick/cane) using public transport (bus and London Underground, or Tube as we call it). Again, no problems using any of these means of transport. > > Comments > Leg length > > Mr Krikler explained the mechanics of the procedure in detail; my leg was 1.5 cm shorter; once the bio-physics of the pelvis-to-foot is clear and the resurfacing procedure is factored in, it is clear to me why the resurfacing procedure can do very little regarding leg length (mine looks OK now, but I'll have to wait until my gait and posture are corrected and straight before I can establish if there'll be a discrepancy) while THR can be much more effective in mitigating leg length. That's about the only advantage that I could see that THR may have over resurfacing. > > Mobility > > Extremely high extremely early - I'm absolutely impressed. > > Recovery / rehabilitation > > Unbelievably fast and painless (for me at least). However, I realise now that the operation is less than 50% of the solution - the larger part is recovery/rehabilitation. > > ROM > > Could not have imagined that the range of movement would be restored to such a high level so quickly. I said, probably too optimistically, to Mr Krikler that I plan to come for a 6-week check- up on my Honda Hornet to Rugby (ha thought I was mad and he is a biker too). > > My final challenge †" to tie the shoelace on my left foot/shoe. I hope I’ll be able to do that in a few weeks time. Standing on my operated leg, with my good leg in the air (crane-like position), I not a problem but I lack the balance I have when I stand on my ‘good’ leg. > > Blood coagulation risks & management > > Probably the least impressive of the otherwise superb NHS (or, at least that particular Health Trust). Two of us were kept in valuable beds for 3 days - the only thing that happened throughout these 3 days was the dispensing of the correct dosage of Warfarin in the evening and a subsequent INR test in the morning. I'm certain that could have been done in the local surgery / health centre where the patient is based. > Thanks & appreciation > Where do I start? Mr Krikler for his wonderful manner and style with patients. He answered every question without ambiguity, without use of a patronising tone, with the patience that professionals have to have when they're dealing with a layman. The fact that he was nearly invisible and that he made himself appear accidental in this process, helped reassure me, and I suppose other patients of his, that this is a routine op. By the way, Mr Krikler has performed 330+ resurfacings using Cormet in the last 8+ years. If you ask him, he'll tell you openly about the 3-4 cases that needed revisions and why. He does also perform this procedure privately - I understand that the package costs £9,000.00 (US$16,200.00 at 1.8 exchange rate) all inclusive (of course, there's the added travel costs for our USA friends). Considering that the Cormet device costs some £2,000.00, I believe this is very good value for money. Admittedly, it is slightly more expensive than DeSmet in Ghent, Belgium, but we might be splitting hairs here. > > I must mention Safi, a Ward Nurse who appears to be quietly running the show. She is a perfect example of a person who gains respect through her actions and deeds. Her dedication, application, thoroughness, devotion and professionalism were a sight to watch. Luckily, she was given a student nurse to teach as well - the student was in perfect hands and would learn the profession well by being tutored by Safi. > > Nicola, who joined this site and offered to help with advice, is one of these people for whom no problem is unsolvable. One felt safe if she said she would look into something. I can't thank her enough. > > There were numerous staff that were ever so eager to help - I'll mention Ivan (from Zimbabwe, if I remember correctly) and Riki (from Zambia, I believe). These guys were there throughout the long night shift and would respond immediately if you pressed the buzzer - you could have tea at any time of day or night. Whatever you needed, they provided it. > > Lastly, it would be unfair if I did not mention and thank all the other staff at St Cross hospital. This is a nice hospital with diligent and conscientious staff that look well after their patients. Even the food was nice. > > I must finish by mentioning the NHS - this is for the Brits - and stress that anybody who wants to abolish it or plans to privatise it is either insane or deliberately criminal. We have institutions for both types. And for the unfortunate Yanks who have to fork out personal cash for the op - consider strongly Mr Krikler and St Cross in Rugby (although Mr Krikler may suggest another hospital where he operates also). > > I'll shut up now. I hope to have more good news in 4 weeks time when I'm due to see Mr Krikler for a check-up. > 3 +44 (0)7974 981-407 > * +44 (0)20 8501-2573 > @ dan.milosevic@i... > * 1A Cypress Grove > Hainault > ILFORD > Essex > IG6 3AT > United Kingdom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Sunni, Glad you are coming out of the slump. Keep getting better, honey. Hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 At 08:04 AM 5/5/2004, you wrote: >Could your daughter be hesitant to stand on her feet because she's >just not used to being out of the FAB? Exactly what I was thinking. But the rolling would worry me too. I'd give her a week or so out of the FAB and see how it looks then. Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 At 08:04 AM 5/5/2004, you wrote: >Could your daughter be hesitant to stand on her feet because she's >just not used to being out of the FAB? Exactly what I was thinking. But the rolling would worry me too. I'd give her a week or so out of the FAB and see how it looks then. Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 At 08:04 AM 5/5/2004, you wrote: >Could your daughter be hesitant to stand on her feet because she's >just not used to being out of the FAB? Exactly what I was thinking. But the rolling would worry me too. I'd give her a week or so out of the FAB and see how it looks then. Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Hi Our son is bilateral clubfoot and in the DBB 14 hours per day now. He is just 1 and is walking. He rolled, sat up and crawled then started pulling himself up the same, if not before, my friends kids, who do not have clubfeet. Also I have 2 other children (non c/f) and they both walked at about 12 months. I don't think his FAB has hindered him in the slightest. He does not have PT. I think all babies roll their feet. Also I think we worry more because of clubfoot, but brace compliance is critical. Now Connor is walking I have dropped his hours to between 12/14 which also worries me but he needs to be running about. Apparently once they are walking this is PT in itself. Rach, Steve & Connor -- (unknown) My DD has physical therapy through early intervention in our state due to club foot being a diagnosis that is realated to developemental delays with crawling, walking, ect. As an occupational therapist myself I was concerned with her use of her club foot and developmental milestones. My DD also did not want to bear weight on her club foot initially, but the physical therapist had us do some activities to assist with that. Also her ankle was rigid and we did some active and weight bearing stretching that the PT showed me. also started standing on the outside of her left foot intially and I would lift it up and replace it down flat. After about 2-4 days she placed her foot flat. I know that PT is not required, but I like the trained eye of a professional to watch her foot, because my eye is not objective, but I get easily worried. Our PT wanted us to stick to the hours, but make sure to have out of the DBB as much as allowed while she was awake because she was developing abnormal movement patterns. I would check and see if a couple visits with PT would help. The rolling I am not sure about. I always think is rolling her Left foot to much (her club foot), but then I look at her right foot that was not corrected and she is doing the same thing with that. Becky > Hi, > My little girl is just 11 months old today. She was born with bilateral cf and cast using Ponseti method from 3 days old. She did not need the tenotomy in either foot and immediately went onto the DBB after castings. She wore them full time until just a month ago when my Dr. said that she could go down to naps and nightime, giving a total of about 14 hrs a day wear. > Although her feet look good, I am slightly concerned that she does not really want to weight bare much and I have noticed that when she does sometimes her right foor (the one that was slightly stiffer) rolls outwardsI may just be being paranoid, I have an extremely good and well trained Ponseti Dr. but acouple of sleepless nights are taking their toll on my nerves. > I am going to see the Dr. on Monday, but I have one or two questions to all of you with a little more experience. Firstly, does 14 hours sound like enough time in the DBB? > Secondly if I was to email Dr. P. , what kind of photos (that is angles) should I take of her feet and What is his email address? He must get a frightening amount of mail -how long does it take to get a reply? > Any help?comforting thoughts would be most welcome. (Yorks. U.K.) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 My daughter is meeting all her developmental milestones. As on occupational therapist that was one of my major concerns. I also liked having another professionals opinion and suggestions for me to go off of. The stretching we did and weight bearing was when she was still in the DBB 23/24 hours a day so that it wouldn't get tight. (We had a problem with that for a short time before she was weight bearing) Now that she is almost 1 and in the DBB 10-12 hours the crawling, standing, and walking you are right that does the PT for her. Now we are watching for proper gait and foot placement. Also with early intervention we recieve reimbursement for any medical expenses due to her club foot that our insurance does not cover including mileage, DBB, and some lodging. I believe that PT is covered for club foot due to other sydromes that can go along with club foot. Also because alot of the other methods for correction have exhibited delays in development. Becky > > Hi, > > My little girl is just 11 months old today. She was born with > bilateral cf and cast using Ponseti method from 3 days old. She did > not need the tenotomy in either foot and immediately went onto the > DBB after castings. She wore them full time until just a month ago > when my Dr. said that she could go down to naps and nightime, giving > a total of about 14 hrs a day wear. > > Although her feet look good, I am slightly concerned that she does > not really want to weight bare much and I have noticed that when she > does sometimes her right foor (the one that was slightly stiffer) > rolls outwardsI may just be being paranoid, I have an extremely good > and well trained Ponseti Dr. but acouple of sleepless nights are > taking their toll on my nerves. > > I am going to see the Dr. on Monday, but I have one or two > questions to all of you with a little more experience. Firstly, does > 14 hours sound like enough time in the DBB? > > Secondly if I was to email Dr. P. , what kind of photos (that is > angles) should I take of her feet and What is his email address? He > must get a frightening amount of mail -how long does it take to get > a reply? > > Any help?comforting thoughts would be most welcome. (Yorks. > U.K.) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 That is a shame. Using a band-aid blister pad and some socks might have helped. It is a very challenging task initially fitting a child with the brace; children hate being placed in them. sandals (The Ponsetti Brace) seems to work very well, or the straight last, Markell Shoes with the plastizode insert. From: yepizb To: nosurgery4clubfoot Sent: Thursday, May 13, 2004 1:15 PM Subject: (unknown) I am the grandmother of a beautiful 3 month old grandson. He was born with bcf. He was casted at 6 days old by a doctor who told my daughter that 100% needed surgery and casting alone would not work. Well since we knew before he was born that he had cf we did reseach on this website and other and decided to take him to Childrens Hospital in San Diego where we live since Dr. Ponseti's website listed a Dr. Mubarak in San Diego. Well my grandson received 7 more castings and had the tenonomy procedure done and wore his last cast for 3 weeks. After his last casting he was fitted with the white open-toed shoes with the unadjustable bar attached. Within 1 week he developed a severe blister and could not bare to be in his shoes. My daughter called her doctor who instructed her to keep his shoes off until the blister healed and she would be seeing him later that week anyways. At his appointment they put in more padding (a felt pad)in the rear heel of the shoe but the blister still was completely healed and still needed to wait until it healed before putting him back in the shoes. Well he has not wore his shoes for 10 days now! His blister fell off and looked healed 2 days ago and my daughter put him back in the shoes but he cried in great pain and just kept his leggs straight and would not bend them like he used to. She removed the shoes and the top of his feet already started to bruise again. I feel that either his feet were never completely healed after the last casting because he never had an L shaped foot where the heel would be able to sit back into the shoe correctly. He foot always seems to be swollen looking and quite rounded. She called his doctors office today to see if she can be seen earlier than his next appointment on the 27th and she has an appointment for next Thursday the 20th. I will be going with her to make sure I ask the doctor the right questions like - why are his feet so round? With this shape it's impossible to fit in any shoe correctly. Also, should he have another casting to correct what damage being out of his shoes for this long may have caused. I will also ask to have his shoes changed to the newer Markell shoes that look a lot more comfortable than what was given him. Has anyone in the San Diego area been treated by Dr. Mubarak at Childrens Hospital? He was listed as a doctor trained in the San Diego are on Dr. Ponseti's website, but so far he just seem to think everything is going OK, but it doesn't seem that way to me. Thank you to everyone on this site for being so informative and helpful to everyone. You are truley a blessing from God. Brena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 First off - welcome! It sounds like a few things need to be addressed. The first thing would be the correction. The foot should not look weird. It should absolutely look like a normal foot. Maybe a little fatter and shorter but not pointing down and it should actually have a little better dorsiflexion than the other foot, especially after the tenotomy. 10-15 degrees. L shape is bare minimum. It should flex more. Second - he never should have been left out of the shoes for this long. Valuable correction can be lost in just one day, hours even. He should have gone into a healing cast till the blister healed. Do you have his last cast? What degree was the foot turned to if you do? Did you get a chance to read the tips post I sent yesterday? There's a lot of good information there about how to get the shoes on and not cause the blisters. Slipping causes the blisters. If the foot/heel is rising they won't be tight enough and slipping will happen. If the foot isn't corrected you won't be able to get the heel down. After all this time he needs to go back to casts and get proper correction. THEN... back to the shoes. The gold bar is ok - it works. For a baby that age it should be an 8 " bar unless he's really tiny and then a 6 " . Look on the bottom, there should be a sticker that says what size it is. When he goes back to the shoes she'll have to really make sure he's seated properly and buckled in tightly so he doesn't slip again. The bar should be bent 15 degrees to keep the dorsiflexion. The shoes should be set at 70 degrees, if the last cast wasn't 70 degrees do not set the shoes at 70. If it was much less than 60 I would question the correction and last cast. You can move up from 60 degrees slowly over time but it's really better to be corrected in the first place to 70. I don't know this Dr. but I just don't really understand him telling you to leave the shoes off. Sorry but, any dolt knows you loose correction out of the shoes. Otherwise why to use them at all? It sounds like you're back tracking here and that isn't a good thing IMO. Get the baby corrected fully, and whatever you do - either keep the shoes on or go back to a cast. Do not leave them off. If you can get in TODAY (demand it!) do it. The weekend is long and will give you a head start to getting back on track with a cast. I have to run - but you sound like you know enough about this to know things aren't quite right there. Wait till next week for the appointment? He should make time today to see this baby and get his feet corrected. That just isn't acceptable to make him wait. The round top sounds interesting - check out Angel's Plantaris site at http://adifferentfoot.freeservers.com/http://adifferentfoot.freeservers.com/ There are some interesting pics of Kai's feet there that show a rounded top. Not saying this is your little guy, just that you mentioning the rounded top made me think of this. Apparently it shows up after the tenotomy. HTH - will be back later today and hope to hear good news about your grandson. Also, there are a number of people here who live in SD who can help you locally IIRC. > Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 First off - welcome! It sounds like a few things need to be addressed. The first thing would be the correction. The foot should not look weird. It should absolutely look like a normal foot. Maybe a little fatter and shorter but not pointing down and it should actually have a little better dorsiflexion than the other foot, especially after the tenotomy. 10-15 degrees. L shape is bare minimum. It should flex more. Second - he never should have been left out of the shoes for this long. Valuable correction can be lost in just one day, hours even. He should have gone into a healing cast till the blister healed. Do you have his last cast? What degree was the foot turned to if you do? Did you get a chance to read the tips post I sent yesterday? There's a lot of good information there about how to get the shoes on and not cause the blisters. Slipping causes the blisters. If the foot/heel is rising they won't be tight enough and slipping will happen. If the foot isn't corrected you won't be able to get the heel down. After all this time he needs to go back to casts and get proper correction. THEN... back to the shoes. The gold bar is ok - it works. For a baby that age it should be an 8 " bar unless he's really tiny and then a 6 " . Look on the bottom, there should be a sticker that says what size it is. When he goes back to the shoes she'll have to really make sure he's seated properly and buckled in tightly so he doesn't slip again. The bar should be bent 15 degrees to keep the dorsiflexion. The shoes should be set at 70 degrees, if the last cast wasn't 70 degrees do not set the shoes at 70. If it was much less than 60 I would question the correction and last cast. You can move up from 60 degrees slowly over time but it's really better to be corrected in the first place to 70. I don't know this Dr. but I just don't really understand him telling you to leave the shoes off. Sorry but, any dolt knows you loose correction out of the shoes. Otherwise why to use them at all? It sounds like you're back tracking here and that isn't a good thing IMO. Get the baby corrected fully, and whatever you do - either keep the shoes on or go back to a cast. Do not leave them off. If you can get in TODAY (demand it!) do it. The weekend is long and will give you a head start to getting back on track with a cast. I have to run - but you sound like you know enough about this to know things aren't quite right there. Wait till next week for the appointment? He should make time today to see this baby and get his feet corrected. That just isn't acceptable to make him wait. The round top sounds interesting - check out Angel's Plantaris site at http://adifferentfoot.freeservers.com/http://adifferentfoot.freeservers.com/ There are some interesting pics of Kai's feet there that show a rounded top. Not saying this is your little guy, just that you mentioning the rounded top made me think of this. Apparently it shows up after the tenotomy. HTH - will be back later today and hope to hear good news about your grandson. Also, there are a number of people here who live in SD who can help you locally IIRC. > Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 First off - welcome! It sounds like a few things need to be addressed. The first thing would be the correction. The foot should not look weird. It should absolutely look like a normal foot. Maybe a little fatter and shorter but not pointing down and it should actually have a little better dorsiflexion than the other foot, especially after the tenotomy. 10-15 degrees. L shape is bare minimum. It should flex more. Second - he never should have been left out of the shoes for this long. Valuable correction can be lost in just one day, hours even. He should have gone into a healing cast till the blister healed. Do you have his last cast? What degree was the foot turned to if you do? Did you get a chance to read the tips post I sent yesterday? There's a lot of good information there about how to get the shoes on and not cause the blisters. Slipping causes the blisters. If the foot/heel is rising they won't be tight enough and slipping will happen. If the foot isn't corrected you won't be able to get the heel down. After all this time he needs to go back to casts and get proper correction. THEN... back to the shoes. The gold bar is ok - it works. For a baby that age it should be an 8 " bar unless he's really tiny and then a 6 " . Look on the bottom, there should be a sticker that says what size it is. When he goes back to the shoes she'll have to really make sure he's seated properly and buckled in tightly so he doesn't slip again. The bar should be bent 15 degrees to keep the dorsiflexion. The shoes should be set at 70 degrees, if the last cast wasn't 70 degrees do not set the shoes at 70. If it was much less than 60 I would question the correction and last cast. You can move up from 60 degrees slowly over time but it's really better to be corrected in the first place to 70. I don't know this Dr. but I just don't really understand him telling you to leave the shoes off. Sorry but, any dolt knows you loose correction out of the shoes. Otherwise why to use them at all? It sounds like you're back tracking here and that isn't a good thing IMO. Get the baby corrected fully, and whatever you do - either keep the shoes on or go back to a cast. Do not leave them off. If you can get in TODAY (demand it!) do it. The weekend is long and will give you a head start to getting back on track with a cast. I have to run - but you sound like you know enough about this to know things aren't quite right there. Wait till next week for the appointment? He should make time today to see this baby and get his feet corrected. That just isn't acceptable to make him wait. The round top sounds interesting - check out Angel's Plantaris site at http://adifferentfoot.freeservers.com/http://adifferentfoot.freeservers.com/ There are some interesting pics of Kai's feet there that show a rounded top. Not saying this is your little guy, just that you mentioning the rounded top made me think of this. Apparently it shows up after the tenotomy. HTH - will be back later today and hope to hear good news about your grandson. Also, there are a number of people here who live in SD who can help you locally IIRC. > Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Hi - I just emailed you to your cox.net account. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: (unknown) >Date: Thu, 13 May 2004 20:15:05 -0000 > >I am the grandmother of a beautiful 3 month old grandson. He was born >with bcf. He was casted at 6 days old by a doctor who told my >daughter that 100% needed surgery and casting alone would not work. >Well since we knew before he was born that he had cf we did reseach >on this website and other and decided to take him to Childrens >Hospital in San Diego where we live since Dr. Ponseti's website >listed a Dr. Mubarak in San Diego. Well my grandson received 7 more >castings and had the tenonomy procedure done and wore his last cast >for 3 weeks. After his last casting he was fitted with the white >open-toed shoes with the unadjustable bar attached. Within 1 week he >developed a severe blister and could not bare to be in his shoes. My >daughter called her doctor who instructed her to keep his shoes off >until the blister healed and she would be seeing him later that week >anyways. At his appointment they put in more padding (a felt pad)in >the rear heel of the shoe but the blister still was completely healed >and still needed to wait until it healed before putting him back in >the shoes. Well he has not wore his shoes for 10 days now! His >blister fell off and looked healed 2 days ago and my daughter put him >back in the shoes but he cried in great pain and just kept his leggs >straight and would not bend them like he used to. She removed the >shoes and the top of his feet already started to bruise again. I feel >that either his feet were never completely healed after the last >casting because he never had an L shaped foot where the heel would be >able to sit back into the shoe correctly. He foot always seems to be >swollen looking and quite rounded. She called his doctors office >today to see if she can be seen earlier than his next appointment on >the 27th and she has an appointment for next Thursday the 20th. I >will be going with her to make sure I ask the doctor the right >questions like - why are his feet so round? With this shape it's >impossible to fit in any shoe correctly. Also, should he have >another casting to correct what damage being out of his shoes for >this long may have caused. >I will also ask to have his shoes changed to the newer Markell shoes >that look a lot more comfortable than what was given him. >Has anyone in the San Diego area been treated by Dr. Mubarak at >Childrens Hospital? He was listed as a doctor trained in the San >Diego are on Dr. Ponseti's website, but so far he just seem to think >everything is going OK, but it doesn't seem that way to me. >Thank you to everyone on this site for being so informative and >helpful to everyone. You are truley a blessing from God. >Brena > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Hi - I just emailed you to your cox.net account. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: (unknown) >Date: Thu, 13 May 2004 20:15:05 -0000 > >I am the grandmother of a beautiful 3 month old grandson. He was born >with bcf. He was casted at 6 days old by a doctor who told my >daughter that 100% needed surgery and casting alone would not work. >Well since we knew before he was born that he had cf we did reseach >on this website and other and decided to take him to Childrens >Hospital in San Diego where we live since Dr. Ponseti's website >listed a Dr. Mubarak in San Diego. Well my grandson received 7 more >castings and had the tenonomy procedure done and wore his last cast >for 3 weeks. After his last casting he was fitted with the white >open-toed shoes with the unadjustable bar attached. Within 1 week he >developed a severe blister and could not bare to be in his shoes. My >daughter called her doctor who instructed her to keep his shoes off >until the blister healed and she would be seeing him later that week >anyways. At his appointment they put in more padding (a felt pad)in >the rear heel of the shoe but the blister still was completely healed >and still needed to wait until it healed before putting him back in >the shoes. Well he has not wore his shoes for 10 days now! His >blister fell off and looked healed 2 days ago and my daughter put him >back in the shoes but he cried in great pain and just kept his leggs >straight and would not bend them like he used to. She removed the >shoes and the top of his feet already started to bruise again. I feel >that either his feet were never completely healed after the last >casting because he never had an L shaped foot where the heel would be >able to sit back into the shoe correctly. He foot always seems to be >swollen looking and quite rounded. She called his doctors office >today to see if she can be seen earlier than his next appointment on >the 27th and she has an appointment for next Thursday the 20th. I >will be going with her to make sure I ask the doctor the right >questions like - why are his feet so round? With this shape it's >impossible to fit in any shoe correctly. Also, should he have >another casting to correct what damage being out of his shoes for >this long may have caused. >I will also ask to have his shoes changed to the newer Markell shoes >that look a lot more comfortable than what was given him. >Has anyone in the San Diego area been treated by Dr. Mubarak at >Childrens Hospital? He was listed as a doctor trained in the San >Diego are on Dr. Ponseti's website, but so far he just seem to think >everything is going OK, but it doesn't seem that way to me. >Thank you to everyone on this site for being so informative and >helpful to everyone. You are truley a blessing from God. >Brena > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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