to Judy from Atlanta/cervical fusion

[Guest guest]

Dear Judy,

Thank you SO MUCH for your detailed reply. REALLY. Prior to my June 30,

1999 fusion of c-4 through c-6 (most of c-5 being removed), the two horrific

cervical myelograms (had to have a blood patch after the 2nd one) I endured

showed " no abnormality " (but then, I just have to finally say this for the

first time ever....the Dallas neurosurgeon I had at that time was an

egotistical, arrogant ass....his office and exam room walls were literally

covered from floor to ceiling with autographed photos and letters of praise

and magazine and newspaper articles written to and about him by famous

people, as though he sought mainly to impress new, less " important "

patients...and I never sat in his waiting room for less than 4 hours when I

had arrived early for my appt!), the 2nd MRI done then showed spinal cord

compression to the point of it actually not being visible at c-4 and c-5!!!

I had developed a " robot-like " gait, had the numbness and tingling down the

outside of my left arm, impaired gross and fine motor functioning...and yes,

it was beginning to impair my organ functioning. I was in very real and

present danger of paralysis and death. My ortho literally told me not to

stump my toe and stumble or even sneeze without extreme caution! I have had

15 major surgeries, all EDS related, and I can honestly say that my first

fusion is the only one I've ever really felt deep down fear about before

they put me under. I feel much more confident in Dr. Dan Heffez's

procedures and skills. He's the only dr. I've ever been to who did my

cervical MRI not only with me laying flat, but also again with my neck

flexed...then extended, so he could see it from all positions. He had my CT

scan done the same way. As you said, that fusion was done with anterior

incision, and it did make an EDSer " cigarette paper " scar. The incision

itself was odd looking and " raised " for lack of a better word until it

finally scarred. It also tried to reopen (a problem I've had with several

other surgical incisions....my EDSer skin wants to let go of stitches

sometimes). It also took far longer than " normal " for my bones to fuse

around the hardware--over 2 years. That surgery was so extensive, and they

found so much more wrong that needed to be repaired once I was on the

operating table, the surgery wound up lasting nearly 6 hours instead of 2-3.

I had TREMENDOUS, sometimes horrifying, difficulty swallowing

anything....even the smallest bite of food or liquid...for months after that

surgery. My ortho finally theorized (and it makes sense) that because they

had had to keep my esophagus held to the side for so many hours while they

worked to decompress my spinal cord and fuse the vertebrae, etc....that my

esophagus was actually bruised and " dented " in the process. It sloooooowly

improved, but even now, nearly 5 years later, I still have some difficulty

swallowing because of it, and can literally still feel that " dent " in my

esophagus. I assume that a laminectomy with posterior incision would not

create this same issue. I go today (Mon) to the UT Southwest Medical Center

in Dallas to the Center for Mineral Metabolism to see my long term dr. there

to get his thoughts on whether my bone turnover and calcium levels

(historically abnormally low---I do have osteoporosis, and have yearly bone

scans, calcium upload tests, take MEGA calcium supplements, and have my

blood and urine tested every 6 months) indicate whether or not I can

reasonably expect to have a successful fusion. That will give Dr. Heffez

another piece of valuable information. I may have to take para-thyroid

injections (PHT) if my calcium levels are too low. They have been kicking

that idea around for over a year now, but in light of an upcoming spinal

surgery, they may decide to go ahead and try me on it. Naturally, PHT was

not tested on EDSer's, so he has been reluctant to give it to me even though

I am willing. Dr. Heffez does not promise that a laminectomy will eliminate

all of my pain, but hopefully it will ease a lot of the pain between my

shoulder blades and in my neck itself, as well as the numbness and tingling

down the outside of my left arm and fingers....and stablize my c-spine...for

now. In my mind, I have decided tentatively to go ahead with the neurogenic

bladder functioning test (uncomfortable, but not too terribly invasive).

Then after we return from our family vacation in March, do the dreaded

cervical myelogram...then have the laminectomy when school is out for the

summer. Thank you so much again for your reply....and for everyone else's

replies and prayers, too.

Love,

~LoneStarRose~

(~~)

RE: neck surgery

>

> Dear linda,

>

> I was in about the same position you are now 2 years ago. Severe

> stenosis forced me to have anterior cervical surgery where I had fusion

> from C3-C7. Within a week after the surgery, I started to have pain and

> numbness in my left arm. I ws in such pain that I couldn't hold

> anything without dropping it and found my arm was just about useless. I

> want for yet another MRI and discovered that within one wee of the

> surgery, I develped a synovial cyst on T1. 3 weeks later I was back in

> surgery with a posterior fusion from C3-T1.For 2 years I was without

> major pain.

> That is up until Jan 7 04 when the positioning of my neck in surgery

> caused injury to probably the C5 nerve on the left once again resulting

> in pain and numbness in the left arm, tho not nearly as bad as last

> time. I have a bad left shoulder anyway, and this pain is really

> interfering with sleep.

>

> No surgery is fun! But I had an excellent neurosurgeon who made it as

> painless as possible. The posterior surgery is more involved and

> probably carries more risks than the anterior. My recouperation time,

> however, was not that much longer than the first. My only problem is

> that the wound is still scabbing over!

>

> I developed severe anxiety before this past go-round because 3 doctors

> decided that I had a recurrence of breast cancer. As a result , my BP

> went sky-high and I had a major fibro flare as the result of my muscles

> going into spasm (or maybe the other way round). I just saw my

> wonderful pain doctor today who agreed that my neck was injured during

> the surgery on the 7, but that he felt that before I did anything else,

> I should work on muscle relaxation both with meds and meditation,

> visualization or whatever else I wanted to try . If this doesn't

> relieve the pain, we would go to injections before looking at possible

> surgery again.

>

> Anyhow, I know the situation you face and just wanted you to know that

> although there are more risks to posterior surgery, an EDSer with loose

> joints can survive intact. It would be wonderful if you could avoid

> more surgery, but if you must, don't worry excessively over it. (easy to

> say;not so easy to do)

> I will keep my fingers and toes crossed for you (they actually do that

> on their own!)

> Judy/Atlanta

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

>

> The views and opinions expressed in this email are those of the author.

> Always consult your physician before trying any treatment, therapy, or

> exercise program.

>

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