when to panic ... boiled frog syndrome etc.

[rob_zzz]

Has anyone ever heard the story that if a frog is placed in in cold water, and then the heat is turned up very, very slowly, the frog doesn't notice and eventually boils alive? Well apparently this is an urban myth and they do actually jump out (and I don't have anything against frogs so I'm not about to try it myself lol!).

But for the people with cervical spine issues that don't involve significant pain and only "relatively mild" neurological symptoms and few signs - I'm wondering at what point should one get surgery - and also at what point does one 'panic' and rush into surgery asap.

Given that upper motor neuron damage doesn't reverse as easily as lower motor neuron damage (from what I've heard anyway), and so surgery is about halting progression rather than fixing things this is a challenging dillemma and not greatly assisted by the long timeframes it takes to get anything done with the medical system, from waiting times for specialist consultations to waiting times for scans and for surgery. (e.g. I am waiting to speak to my surgeon, I made an appointment three weeks ago, my appointment is in two weeks and thats pretty good going compared to how it can be).

I'm pretty sure I'm at a point where I need surgery - I'm wondering if I should be pressing for seeing my local fusion surgeon asap, or waiting until I can get an ADR scheduled overseas (if its deemed appropriate). I'm walking, I'm typing, but I'm not feeling particularly happy with whats happening in my arms and legs at the moment thats for sure. But maybe I'm a panicking hypochondriac - though after two years of high levels of stress about this situation I don't think so.

Rob.

[mmglobal]

Someone did a study in which they immersed spine patients legs in boiling water. They just took more Neurontin.

I don't think anyone can answer Rob's question... it's all about your individual case. My understanding is that if you are dealing with exiting nerve root issues, (pain/numbness in arms/hands) you are in better shape than if you are dealing with spinal cord issues and even more specifically, changes to the myelon. If you've got gait problems, bowel/bladder dysfunction, sexual dysfunction, strength loss, etc... take it seriously.

Mark

[rob_zzz]

Someone did a study in which they immersed spine patients legs in boiling water. They just took more Neurontin.

lol.


thanks for the reply Mark. I don't have any of those at the moment. I have lately been getting intermittent feelings of weakness in the legs which is one of the things that has been worrying me - its a difficult feeling to describe - a bit like 'nausea', but in the leg - not unlike that woozy feeling after your leg wakes up if its been numb from sitting awkwardly, but I haven't been sitting awkwardly when it happens.

A visit to the GP today, who knows nothing about this stuff at all, but listened to my symptoms, seemed to be taking them all on board, then read the radiologist report - which I've read and for a change I think its quite a detailed and balanced report compared to most radiology reports. The GP picked out one line that says 'no evidence of significant stenosis' and pretty much spent the rest of the session questioning why I thought this was caused by my neck and pretty much ignoring everything I was telling her, which was a bit frustrating. (in spite of other comments in the report that qualify that statement and point out that the canal is not developmentally generous etc.). The GP also didn't choose to actually look at the MRI scan itself. Not that I was even there for an opinion anyway, was just after another referral and some information about which local surgeons did prodisc-C (not able to help in that regard).

Even though it annoyed me a bit, it did get me back to wondering if I'm being overly worried about this stuff. Which is pretty much the point of this thread I suppose. I'll wait to see what my surgeon say's about it all I guess and try to put it out of my mind again for the time being.

[Michelle]

More Neurontin!! That's great!!

If it helps here's a list of docs who participated in the ProDisc trials in the US-I don't know where you are, so who's close to you.

Hyun W. Bae, M.D.The Spine Institute at Saint John's Health Center 1301 20th Street Santa Monica, CA 90404 Tel: (310) 828-7757 Fax: (310) 828-6687 Coordinators: Lea Kanim & Parveen Sra

John A. Bendo, M.D. NYU/HJD (New York Univ. Medical Center/Hospital for Joint Diseases Spine Center) 301 East 17th Street, Room 400 New York, NY 10003 Tel: (212) 263-3574 Coordinator: Jessie PierreWebsite: www.hjdspine.com

Richard A. Balderston, M.D.Pennsylvania Hospital 800 Spruce Street, First Floor Philadelphia PA 19107Tel: (215) 829-2224

David Bradford, M.D.Department of Orthopaedic SurgeryUniversity of California500 Parnassus AvenueSan Fransisco, CA 94143Tel: (415) 502-5333 Coordinator: Robin Roland

Frank P. Cammisa, Jr., M.D.Hospital for Special Surgery 523 East 72nd Street New York, NY 10021 Tel: (212) 606-1946 Fax: (212) 472-1486Coordinator: Theresa Tel: 212-606-1849

Guy O. Danielson, M.D.NeuroCare Network733 S. Fleishel Tyler, TX 75701 Coordinators: Tanya Fitzgerald & Jennifer JonesTel: (903) 597-3472Fax: (903) 593-8133

Rick B. Delamarter, M.D.The Spine Institute at Saint John's Health Center 1301 20th Street Santa Monica, CA 90404 Tel: (310) 828-7757 Fax: (310) 828-6687 Coordinators: Lea Kanim & Parveen Sra

Thomas J. Errico, M.D.NYU/HJD (New York Univ. Medical Center/Hospital for Joint Diseases Spine Center)301 East 17th Street New York, NY 10003 Tel: (212) 598-6114, (212) 263-3574 Fax: (212) 598-6175Coordinators: Alexandra Lee, RN & Jessie Pierre

Kevin Foley, M.D.The Image Guided Surgery Research Center 220 S. Claybrook, Suite 700 Memphis, TN 38104 Tel: (901) 726- 8993 Fax: (901) 726- 8466 Coordinator: Jaquee Peterson

Jeffrey A. Goldstein, M.D.NYU/HJD (New York Univ. Medical Center/Hospital for Joint Diseases Spine center) 19 Beekman Street New York, NY 10038 Tel: (212) 263-3574 Coordinator: Jessie PierreWebsite: www.seaportortho.com

Thomas T. Haider, M.D. Haider Spine Center Medical Clininc, Inc. 6276 River Crest Drive, Suite A Riverside, CA 92507-0754 Tel: (909) 413-0200 Fax: (909) 653-5680 Coordinator: Todd Ackarman Tel: (909) 413-0215 Fax: (909) 653-5680

(MY SURGEON) Michael E. Janssen, D.O.Center for Spinal Disorders 9005 Grant Street, Suite 200 Thornton, CO 80229 Tel: (303) 287.2800

Raymond J. Linovitz, M.D., F.A.C.S.CORE Orthopedic Medical Center320 Santa Fe Drive, Suite 204 Encinitas, CA 92024-5179 Tel: (760) 943-6700 Fax: (760) 753-4179 Coordinator: Germaine LuyckxWeb: www.sdorthopedic.com

Timothy A. Peppers, M.D.CORE Orthopedic Medical Center320 Santa Fe Drive, Suite 204 Encinitas, CA 92024-5179 Tel: (760) 943-6700 Fax: (760) 753-4179 Coordinator: Germaine LuyckxWeb: www.sdorthopedic.com

John Sherman, M.D. Twin Cities Orthopaedic Consultants6600 France Avenue South Suite 605 Edina, MN 55435 Coordinator: Barbara de Borhegyi, RN Phone: (952) 920-4333

Jeffrey M. Spivak, M.D. NYU/HJD (New York Univ. Medical Center/Hospital for Joint Diseases Spine Center) 301 East 17th Street, Room 400 New York, NY 10003 Tel: (212) 263-3574 Coordinator: Jessie PierreWebsite: www.hjdspine.com

L. Erik Westerlund, M.D.CORE Orthopedic Medical Center320 Santa Fe Drive, Suite 204 Encinitas, CA 92024-5179 Tel: (760) 943-6700 Fax: (760) 753-4179 Coordinator: Germaine LuyckxWeb: www.sdorthopedic.com

James Yue, M.D. Yale University Department of Orthopedic Surgery 800 Howard Avenue Post Office Box 208071 New Haven, CT 06520Coordinator: Caryl Boardman Tel: 203-737-5662

Jack Zigler, M.D.Texas Back Institute/Texas Health Research Institute 6300 W. Parker Road, Suite 100 Plano,TX 75093 Tel: (972) 608-5000Fax: (972) 608-5020 Coordinator: Holly Graham Tel: (972) 981-3750

Jim Zucherman, M.D.St. Mary's Spine Center1 Shrader St., #450San Francisco, CA 94117Tel: (415) 750-4955 or (415) 750-5835 Fax: (415) 750-8103 Coordinator: Deyne Feinberg



Hope you get some help soon!!

[dshobbies]

Did they fail to realize their legs were in boiling water? Perhaps they should switch to Lyrica!

Very informative post Michelle.
Dale

[rob_zzz]

thanks for the info Michelle - I'm in Australia and have seen a few different surgeons here. I've got an appointment with the main one I've been seeing in two weeks. As Mark said - its very much an individual case basis with this stuff. I've been thinking about having something done about this for quite a long time now, and ignoring it isn't making it go away or stopping it from deteriorating, so I'm comfortable that if I do get something done its for good reason.

[fortitudine]

Hi Rob,
Do your legs feel 'heavy', as if you are walking through water? That's the way mine felt when I had edema (equals cord compression) in my spinal cord at c 3/4/5. It was a very weird feeling - they moved fine but felt sluggish.Didn't last for more than a few days. I have also had times when parts of the legs- shins, feet, felt a bit odd, but only for a few hours at a time, and usually some wiggling around of the neck and spine would fix it.

At the least it does sound like it's time for you to have another MRI, which can then be compared to any previous films for any worrisome changes. Hopefully it will put your mind at rest or help you make a decision. It's no fun living in limbo!

Per Dr. Fenk-Mayer's recommendations I'm having a new MRI - my 4th in 2 1/2 years - on Dec.2, at a new location. It will be interesting to see what they say, since they don't have the history that the previous clinic does - will it be RED ALERT: cord compression, imminent paralysis, etc or ??? (I've waited 6 months to get one for free under or public health care system)

Have you made any changes in your daily pattern that might explain things? As always, caffeine exacerbates symptoms quite a bit, as do diuretics, which I take minimally and sparingly to prevent lymph edema from the NSAIDS I'm on. Clearly dehydration is hard on a compressed cord. Also, I start to feel a bit 'off' if I don't move regularly, i.e aquacize at least 4x a week. Bad posture also doesn't help.

All of us with a similar situation run the risk of being paralysed by a whiplash-type injury; other than that it's kind of what works for you. It's good you have an appointment soon; getting in to see an NS in 5 weeks would be considered a miracle here - hopefully he will be helpful and not alarmist. Just remember: if he says you seem okay, ask how quickly you can see him if things start to go sideways. i.e. have a backup plan.

[sahuaro]

Thanks, fortitudine, for your clear description of some of the symptoms of cervical problems. Most of the time I think I'm just imagining these weird sensations, so you have really helped. I would add that immediately after my MVA, I really had trouble walking, with the sense that my legs were going to stop working, and this happened twice more; lately, the leg symptoms have been more like what you describe.
I haven't chimed into the discussion because I am struggling with the same issues...

[Hucky :)]

Hi Rob,

I think Peter Maloney uses Prodisc C. You could check and see what Andrew Kam is using these days, I know he was using the Bryan 2 years ago. Tim Steele at St. Vincents did Paininthenecks prodisc-C.

Hucky

[rob_zzz]

Thanks everyone for the replies.

Fortitudine/Sahuaro - yes the symptoms in my legs are as you describe - and I get similar stuff going on in my arms/hands. Parts of my legs feel like they are slightly numb, even though I can feel them and everything is working ok. I also get pins and needles running up my legs more often, my outer toes have unusual tightening/motor sensations, there's intermittent buzzing and tingling in my feet and running up my legs, there's a prickly/cold/wet feeling up my legs and in my groin/buttocks, and yes my legs feel heavy and occasionally quite weak. Similar stuff in the hands and arms.

I'm at a point now that I want to have some surgery and I almost don't care what type, and I just hope I can find someone to do something soon. The leg and arm symptoms are definitely much more noticeable than two weeks ago and also much much more prevalent than they were a year ago. I had another MRI and things haven't changed that significantly on the scans, the disc is still protruding and hasn't receded. This stuff has been going on for quite a while now - since not long after the injury, and its slowly getting worse though lately it seems to have stepped up the pace a little.

Hucky thanks for the info - I haven't seen a surgeon for a year but have another appointment with the main surgeon I've been seeing who does fusions. Its interesting that Tim Steel is doing the pro-disc - I think this is a better option than the Bryan for my situation, though I'm thinking that if I go with the pro-disc option it might be better to get it done overseas by someone thats done hundreds of them.

But like I said at the moment I'm just hoping I'll find someone that is willing to do something sooner rather than later.

Do you know how 'painintheneck' is going after the surgery? It is great that there are now people doing prodisc-C in Australia and they will start to build up a good body of experience over the next couple of years.

[Hucky :)]

Rob,

Here's the link. You can read for yourself.

http://adrsupport.org/eve/forums/a/t...1/m/1161028012

and Bobs experience:

http://adrsupport.org/eve/forums/a/t...1/m/7251056412

Hope this helps,

Hucky

[rob_zzz]

thanks for those Hucky. Sounds like Bob's prestige surgery has gone very well for him which is good to hear. Will look forward to further updates from painintheneck.

[Eddie G]

How cute a little frog Prodisc must look.

[Michelle]

How great are the drugs you're on, Eddie!! LoL Thanks for the laugh!! I can even picture it!!