An Open Letter To Spine Surgeons

[ADR seeker]

This a a rough draft of a letter I will be sending to surgeons in my area. Any suggestions would be appreciated.

This is tough for me because I hate most doctors with a passion. I may or may not be justified in that hatred but I don't want to cloud my judgement. I am so angry because the technology is there to help me but not in greedy Amerika and I cannot afford to go out of country.

I need to vent. When the next terror attacks happen I hope they hit the FDA big pharma and Wall Street. Then I will go to the funerals and cheer and dance on their graves.


++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++

Dear Doctor,
I have DDD in the cervical spine. I am male and 56 years of age. MRI of 2/17/10 shows the following:
C2-3 is unremarkable
C 3-4 has ucinate arthrosis, bilateral moderate foraminal narrowing. Disk osteophyte complex contributes.
C4-5 has ucinate facet arthrosis with moderate left and mild right foraminal narrowing.
C 5-6 has spondylitic ridge, spodylitic bulge and moderate bilateral foraminal narrowing. There is mild canal stenosis. The canal is mild canal stenosis. The cord is contacted and slightly indented.
C 6-7 has slight spondylitic change, mild bilateral foraminal narrowing.
C7-T1 Upper thoracic regions are appropriate.

Over the years I have sought help for this condition and has given varying opinions on what needs to be done. I have not heard many positive things about fusions and in my case what was not reported on the MRI but was conveyed to me by a chiropractor and an orthopedic surgeon is that my C-spine in congenitally too narrow and that is why I am more symptomatic than others with similar pathology.

I have been given conflicting information regarding the removal of bone. One surgeon told me that it would "grow back with a vengeance" while others say the jury is still out on the subject of hyperthrophic ossification and auto fusion following the removal of bone.

I have been looking into a procedure that uses a cannula (percutaneous endoscopic cervical diskectomy) to reach the offending disk and osteophytes and then removes them but I heard that the weakening of the disk's annulus that will lead to another herniation. I have read that biological injections into the disk can prevent this but to the best of my knowledge these are not available in the US. I have received information from a couple of the laser spine mills only to find out that it's a scam and that reputable surgeons offer a similar procedure.

I cannot afford to go overseas and get the M6 or the Neo disk which I believe is the best solution for me so I am left considering a partial removal of the offending disk fragments and the osteophytes.

As it stands I am disabled by this condition and I have been unable to find a satisfactory solution. That is why I am sending out letters to surgeons in the hope that I can obtain a solution or a solid answer.

I have been offered ESI which will not fix anything, fusion which will probably make things worse, radio frequency nerve ablation, (no thanks!) PT which has made things worse, and pain meds.

Given the above MRI report what do you think would be my best option?

Can bone be cleared away without it returning?

If part of the disk is removed how often do they fail catastrophically?

It the disk has dried out is it less likely to fail after a partial diskectomy?

In your best judgement, if the disk bulges at C 3-4 and 5-6 were resolved would most of my pain and tingling symptoms resolve?

If you had my condition and had to pick a surgeon or procedure in NC who would you choose for you or a loved one?

Do you know of anyone doing nucleus implants?

What I think I require is removal of the disk fragment along with the osteophyte complex at C 3-4 and C 5-6. As an adjunct to prevent further herniation at those levels is I need nucleus replacement using a balloon-contained, injectable polyurethane device ( such as the DASCOR device that has done remarkably well in clinical trials. I would need a compassionate use wavier to have this done since the FDA is behaving badly as per usual.

Here's is where I am at currently. I have a very low quality of life. The technology is there to fix this but it is unavailable to Americans so I a seeking something that comes close or an exception to the ridiculous and cruel FDA rules that prevent people with my condition from getting the medical help they require. With my future bleak this is my last ditch effort to get help. Unless I win the lottery so that I can get to a more compassionate and advanced country that offers the proper I am destined to suffer with little or no hope in sight as my C spine gets worse for lack of proper medical care. If this offends good then I have offended the right person. If this moves you to help me then please contact me and do what you were trained to do and that is heal the sick.

[Maria]

ADR seeker
This is nice and low key for you while still being direct enough to perhaps elicit some answers. I'd be inclined to change the last sentence as that sounds like a command rather than a plea. I'd be surprised if anyone in the US answers an open letter with anything written because of potential legal reasons unless they are sure to include language which makes it perfectly clear that they are in no way offering any care or recommending any surgery w/o having seen a patient first. Be sure to include your phone number just in case somebody may actually call you which I'm thinking won't happen but you never know.

There are a few typos and/or left out words that you'd need to correct first..

The one surgeon that actually took the time to talk to me via phone and answer my questions was Dr. Dillon of Kerlan Jobes in LA county. He talked to me for a half hour and was like the guy next door and he was at home because his wife was calling him for dinner. Real nice person. I thank him everyday for giving me his opinion of 3 level global fusion success (not very) tho he did offer to give me an opinion based on seeing me and having a discogram was done (later I went on to have 3 discograms done and had a number of surgical consultations tho not for fusion, rather ADR).

Good luck.

[jsewell]

Hi
I would leave out the sentences about offending anyone. I think you have made your point in your letter and if i were reading this as a surgeon , i don't think i would answer you based on that comment.
Good Luck
judy

[ADR seeker]

Originally Posted by Maria

ADR seeker
This is nice and low key for you while still being direct enough to perhaps elicit some answers. I'd be inclined to change the last sentence as that sounds like a command rather than a plea. I'd be surprised if anyone in the US answers an open letter with anything written because of potential legal reasons unless they are sure to include language which makes it perfectly clear that they are in no way offering any care or recommending any surgery w/o having seen a patient first. Be sure to include your phone number just in case somebody may actually call you which I'm thinking won't happen but you never know.

There are a few typos and/or left out words that you'd need to correct first..

The one surgeon that actually took the time to talk to me via phone and answer my questions was Dr. Dillon of Kerlan Jobes in LA county. He talked to me for a half hour and was like the guy next door and he was at home because his wife was calling him for dinner. Real nice person. I thank him everyday for giving me his opinion of 3 level global fusion success (not very) tho he did offer to give me an opinion based on seeing me and having a discogram was done (later I went on to have 3 discograms done and had a number of surgical consultations tho not for fusion, rather ADR).

Good luck.

Thanks for the best wishes and the critique.

I did get a call from a surgeon in Chapel Hill who was involved in the clinical trials for Neo Disk. He did 14 of them and only one failed and he was honest enough to admit is was his fault. He used the wrong size implant. Neo Disk is still not available and Spinal Kenetics has no plans to seek FDA approval for the M6.

The FDA has gotten worse under Commissioner Margaret Hamburg MD. She is now stacking the advisory panels with paid industry shills.

You can contact the FDA to oppose the new draft guidance by writing to:

Dockets Management Branch (HFA-305)
Food and Drug Administration
5630 Fishers Lane, Room 10-61
Rockville, MD 20857

Or calling:
(888) 463-6332

Be sure to reference Docket No. FDA-1999-D-0792

To contact FDA Commissioner Margaret Hamburg directly, you can call her:

(301) 796-5000

Or email her:

Office: Margaret.Hamburg@fda.hhs.gov
Personal: margaretahamburg@aol.com

You can also contact your representatives by visiting:
Congress.org - Get informed, get involved

[Maria]

ADRseeker,
Glad you got a phone call. That was real nice of the surgeon and to also admit a failure of his own doing (picking too large a size)~ very good of him.
Hope you get even more responses after the holiday perhaps.

Thanks for the FDA contact info.

[ADR seeker]

Originally Posted by Maria

ADRseeker,
Glad you got a phone call. That was real nice of the surgeon and to also admit a failure of his own doing (picking too large a size)~ very good of him.
Hope you get even more responses after the holiday perhaps.

Thanks for the FDA contact info.

This guy was a real gem. He was a man who loves his profession and his patients. He sounded very excited about what he does and he also sang the praises of Dr Luis Paneta in Brazil.

What is more troubling to me than what the FDA does not approve is what they do approve. If you Google FDA corruption you will get close to 39 MILLION results.

[jsewell]

I hope you get many more answers to your letter. Did that doc offer any advice to you?
judy

[mmglobal]

Dascor is a failed device.

In NC, I like Dan Murrey at OrthoCarolina.