Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 Hi ... Dr. Bradford is retired. Between Drs. Berven and Hu, you’re in great hands with either doctor. Having the implants removed does, in some cases, resolve pain. However, I can’t remember ever hearing that a new pain was caused by the rods, but I’m not a medical professional. I would definitely get a second opinion before doing anything. I will be interested to hear what Dr. Hu says about whether she thinks rod removal will resolve your pain. Be sure to let her know that the pain is something new. Regards, On 12/31/06 11:55 AM, " maria_in_sd " <maria_in_sd@...> wrote: Hello everyone, I have an appt with Dr Hu on 1/10/07. I am relatively new to the group. I live in San Diego and I have seen Dr Garfin at UCSD. After reading the messages I thought it would be good to see Dr Hu. I am including my history and I have a few questions. I had scoliosis surgery with 2 harrington rods when I was 13. I am now 44 and have started having lower back pain. It is also hard to stand and walk for a long time. Dr Garfin recommended a discogram to determine the cause of the pain. He now recommends surgery to remove the rods since it is causing the pain. He feels that I will probably need flatback surgery sometime in the future. I work full time and I exercise with the Medex back machines. 1.Has anyone had the rods removed and had the pain go away ? 2.Who are some of the best surgeons in California for flatback. It seems that UCSF is the best location. I have heard of a few surgeons, - Dr Hu, Dr Bradford, Dr Berven etc. Is one of them more experienced ? Thank you and Happy New Year! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 Welcome , I think you are probably in good hands no matter who you see in that UCSF group. They are very well versed in the kinds of problems and questions you bring. Are you considering having DrGarfin remove your rods or will you just wait and see what they say at UCSF? Generally, and I mean very generally, it seems like folks that have problems with their rods do so pretty much from the " get go " ...but when pain develops much later it may or may not be the source. How far down are your fused, if you know? It does seem that the lower you were fused originally, the more likely you are to have problems in the remaining mobile discs. Please let us know what you find out from DrHu...I will put your appt, on the calender to remind you to tell us! Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 Cam and - thanks for the advise. I am fused to L-3. The discogram was done to determine if the discs or the rods were causing the pain. The surgeon injected a painkiller around the bottom of the rods and I felt great. When they completed it, I could stand and walk for the rest of the day without pain! I look forward to meeting Dr Hu and getting her opinion. If she agrees with Dr Garfin, then I will have the surgery performed at UCSD by Dr Garfin. If I have to do flatback surgery in the future, I will like to have Dr Hu perform the surgery. cammaltby <cammaltby@...> wrote: Welcome ,I think you are probably in good hands no matter who you see in that UCSF group. They are very well versed in the kinds of problems and questions you bring.Are you considering having DrGarfin remove your rods or will you just wait and see what they say at UCSF?Generally, and I mean very generally, it seems like folks that have problems with their rods do so pretty much from the "get go"...but when pain develops much later it may or may not be the source.How far down are your fused, if you know? It does seem that the lower you were fused originally, the more likely you are to have problems in the remaining mobile discs.Please let us know what you find out from DrHu...I will put your appt, on the calender to remind you to tell us!Take Care, Cam __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 Hello -- I have seen Dr. Hu twice in the last 6 months. First for a consult, then she ordered a CT Mylogram to see what is causing my lower back pain. I already knew that I had arthritis in my lower back and another doctor had told me that and that I had flatback. The first time I saw her she said that I was a good candidate for flatback revision surgery...and depending on what the Mylogram showed...disc surgery as well. I told her that if I was going to have any surgery on my back I wanted to do the whole thing at once....not do the disc surgery and fusion and later go back for the flatback revision. (I'm not into having alot of surgeries--the fewer the better) She agreed with me. I have been having lower back pain now for about 20 years. It has gradually gotten worse. To back up, I'm 49 now and had my original surgery at age 16 with the H-rod and fusion T-5 to L-4. I got about 10 years out of the surgery with very little pain. Then I started getting pain shooting down my left leg like sciatica. That has gradually gotten worse to my whole lower back and nerve pain in my legs and I also cannot stand or walk very long. The past few years it has gotten a lot worse. The first time I found this website I thought the people were " crazy " for talking about having another back surgery. I didn't go online again for quite awhile. Then about a year later, I was having pain, so I went on to try to find answers, and I began to realize what was wrong with me from the kind people here guiding me to articles and info. online. I diagnosed myself with flatback, and from reading this site I found out there were two good revision surgeons in California (where I live) and knew that I had to get there somehow to have them look at me to see exactly what WAS wrong with me. I learned Dr. Hu and Dr. Berven are the best at this in California. I didn't want to go out of state because of financial reasons. Hope you get answers from Dr. Hu. She is very kind and thorough. She knows her stuff. (And yes, ie, she " smiles " .) Carol V. (CA) > > Hello everyone, > > I have an appt with Dr Hu on 1/10/07. I am relatively new to the > group. I live in San Diego and I have seen Dr Garfin at UCSD. After > reading the messages I thought it would be good to see Dr Hu. > > I am including my history and I have a few questions. > > I had scoliosis surgery with 2 harrington rods when I was 13. I am > now 44 and have started having lower back pain. It is also hard to > stand and walk for a long time. Dr Garfin recommended a discogram to > determine the cause of the pain. He now recommends surgery to remove > the rods since it is causing the pain. He feels that I will probably > need flatback surgery sometime in the future. I work full time and I > exercise with the Medex back machines. > > 1.Has anyone had the rods removed and had the pain go away ? > > 2.Who are some of the best surgeons in California for flatback. It > seems that UCSF is the best location. I have heard of a few > surgeons, - Dr Hu, Dr Bradford, Dr Berven etc. Is one of them more > experienced ? > > Thank you and Happy New Year! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 , I hope its a good start that the painkiller helped around the bottom of the rods! Be sure to talk over all the options with DrHu...I believe that, like my surgeon, she sometimes shortens the old rods and leaves them in place attaching new implants along the way when doing revision. It sometimes can save a lot of digging/blood loss if the old rod is intact. Anyway...the point is, there can be more than one way to " skin a cat " and maybe you won't even have to have the whole rod out at this time if your main problem is around the bottom of the rod. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 , Your post caught my attention. You can read more of my history in the files section of the site (although it is dire need of an update), but I wanted to address the rod removal diagnostics part of your post specifically... In 1996, I had injections done under live x-ray (I'm sure there is a more technical term than that) and I pointed to the most painful spot during the procedure. The anesthesiologist injected as precisely as possible in the vicinity of my short rod (you can also see my x-rays pre and post revision in the photos section). The pain went away immediately and I began to cry tears of relief. The relief lasted about ten days, I believe, and then came back. I sought a second opinion from a neurosurgeon I highly regarded and decided to have that rod removed. All agreed that it was still a 50/50 chance the rod was causing the pain, but that it wasn't going to hurt anything to remove it...Long story short, I woke up in recovery hearing a nurse tell somebody that they didn't take it out. Even after revision surgery, I still have that rod in me. It is completely encased in bone and it is considered too high a risk to chisel it out and remove it. What they did find in 1996 was a bursa and some calcium deposits lodged in the surrounding tissue (which caused the bursa to form). They cleaned up the area (removed the bursa and bone) and stitched me back up. NOTE: I did feel better after surgery and was able to avoid revision for nine more years, but if I had known about revision surgery, I believe I would have had it done in 2003 or 2004. I suffered a great deal in the 24 months before my last surgeries. I, too, have had a discogram (but in my cervical spine) and consider it one of the more barbaric diagnostic tests ever invented. I'm sorry you had to experience that. I also want to point out that I am not suggesting you take any specific course of action, rather, I want to share my experience with you so that you can have as much information as possible to make the best decision for you. I'll be curious to hear what Dr. Hu has to say. Best wishes! kam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Thank's (())... Ken. <mrstrem@...> wrote: Thought I would post a pic of my room I was in at UCSF last winter. In case anyone pondering surgery with Dr. Hu was curious about the rooms. You can see snoozing in her fold out bed next to me. Also the wooden panel on the wall is actually your closet.They are really nice there about accomdating you with a private room if your having someone stay with you. stayed with me a total of 11 days, then Bob took over for the last week, and also the second time I was in. Guess I should have posted that awhile ago. Oh well better late than never.Wish we could all coordinate our visits with Dr. Hu, I see her on the 27th of this month. Just missing Kim and Carol's visits.Glad to see everyone who is fresh out of their surgeries doing so well.Ken, I do hope you get to see a surgeon, find one that you like. Onward! You can do it!! Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 - Hi UCSF is a great hospital and especially the neurology dept. My husband has Multiple Sclerosis so Avonex would be one of the drugs they would want him to take. My husband has a different neuro who specialises in MS so I cant give you any info about your doctor. That is a long way to go to see a doctor though so I hope it works out. Are you hoping to get a perscription for LDN or are you already taking it? There are doctors closer to here that would probably prescribe for you. Good luck anyway - San Francisco is beautiful so it`s a wonderful place to visit even for no reason! Bev -- In low dose naltrexone , " D GRADISKA " <allegria47@...> wrote: > > Oh, this is very interesting. I have an apt to see Dr. Engstrom at UCSF ! I wonder if this is your doc? Can you kindly tell me if you think UCSF has been helpful at all because I intend to fly all the way out from Colorado for tests etc as doctors here have done nothing - and I mean nothing for my PN. > > Would be very grateful to learn your thoughts about UCSF neurology.. > > BTW, what his Avonex? and how is this supposed to help PN? > > Thanks, > > Colorado > [low dose naltrexone] Re: Dr Kita Seattle > > > My husband`s neuro at UCSF is the same! Even though has been stable with no progression for four years, when I ask the neuro how his other (very few I think) patients are doing, he doesnt or wont say. Like he wont give it any weight at all - really annoying. > If stumbles or isnt quite so fast of one the cognative tests he says " we might have to start him on Avonex " !! We just laugh and tell him we`ll see him in a year. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Thanks, Bev, for the info. Yes, I am a native San Franciscan.. moved to Colorado about 4 years ago because the dollar stretches much farther here and I can live with my mules. Try to find 42 acres a large house and barn in the SF area!! There is a nurse practitioner who will prescribe the LDN for me locally for the Hashimoto's disease. I'm a bit afraid to try it because it means coming off the pain meds for the PN and I also worry that I'll have another thyroid storm. I thought I would surely have a heart attack. Thanks for the UCSF reference. I really need to get out there. Colorado [low dose naltrexone] Re: Dr Kita Seattle> > > My husband`s neuro at UCSF is the same! Even though has been stable with no progression for four years, when I ask the neuro how his other (very few I think) patients are doing, he doesnt or wont say. Like he wont give it any weight at all - really annoying. > If stumbles or isnt quite so fast of one the cognative tests he says "we might have to start him on Avonex"!! We just laugh and tell him we`ll see him in a year.> > > > > > > > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Hard to even find a one bed flat here for under half a million so I totally understand the move - we think about it every year but have yet to come up with a place like this thats affordable! - In low dose naltrexone , " D GRADISKA " <allegria47@...> wrote: > > Thanks, Bev, for the info. Yes, I am a native San Franciscan.. moved to Colorado about 4 years ago because the dollar stretches much farther here and I can live with my mules. Try to find 42 acres a large house and barn in the SF area!! > > There is a nurse practitioner who will prescribe the LDN for me locally for the Hashimoto's disease. I'm a bit afraid to try it because it means coming off the pain meds for the PN and I also worry that I'll have another thyroid storm. I thought I would surely have a heart attack. > > Thanks for the UCSF reference. I really need to get out there. > > > Colorado > [low dose naltrexone] Re: Dr Kita Seattle > > > > > > My husband`s neuro at UCSF is the same! Even though has been stable with no progression for four years, when I ask the neuro how his other (very few I think) patients are doing, he doesnt or wont say. Like he wont give it any weight at all - really annoying. > > If stumbles or isnt quite so fast of one the cognative tests he says " we might have to start him on Avonex " !! We just laugh and tell him we`ll see him in a year. > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Hello. You have been asking about UCSF.I am a patient there in Multiple Sclerosis Center. I too have been interested in LDN.I am becoming very debilitated,and I think LDN may be helpful. I have been researching the treatment on the Net,and discovered that my neurologist,Bruce Cree,MD,PhD did a study last year,and was cautiously optimistic. When I asked him if I could get a script for it,I was denied. I suffer much pain among other things,and have been on pain meds last 7 years. What I must do is to get off them(opiates) for a month then "we will talk again." It is imperative one does not take opiates. Ciao Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2009 Report Share Posted May 17, 2009 Cara Joanna, Which pain meds are you taking, may I ask? Are they for the MS or something else? Honestly the more I learn from you people I think I may have MS, not peripheral neuropathy. That’s one reason why I really want go to UCSF. Docs here say "you've got a plate in your head - no way to properly diagnose if its MS...then they give me a script for pain meds and push me out the door. What did your doc mean by "cautiously optimistic?" Interesting that he wants you off the pain meds for a month. Most of what I've read indicates 2 weeks should be sufficient... maybe it has to do with the length of time we've been on them? Did your doctor explain to you how to safely taper down the pain meds? I certainly hope so. Thanks, [low dose naltrexone] UCSF Hello. You have been asking about UCSF.I am a patient there in Multiple Sclerosis Center. I too have been interested in LDN.I am becoming very debilitated,and I think LDN may be helpful. I have been researching the treatment on the Net,and discovered that my neurologist,Bruce Cree,MD,PhD did a study last year,and was cautiously optimistic. When I asked him if I could get a script for it,I was denied. I suffer much pain among other things,and have been on pain meds last 7 years. What I must do is to get off them(opiates) for a month then "we will talk again." It is imperative one does not take opiates. Ciao Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Hello Missy! I guess I missed out please tell us a little about your self From: Kasselman <magick_willow@...>Subject: [ ] UCSF Date: Monday, October 25, 2010, 6:18 PM hello, i'm missy, i just signed up last night in this group, thank you all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 Hello Missy, I have only been here a few days, but you will find that everyone is very kind and very helpful... Don't be afraid to ask any question ok.. In a message dated 10/25/2010 5:20:43 P.M. Central Daylight Time, magick_willow@... writes: hello, i'm missy, i just signed up last night in this group, thank you all! Quote Link to comment Share on other sites More sharing options...
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