Newly Diagnose With Cervical Stenosis!!!!

[sue1234]

I have just gotten back from my new neurologist's follow-up appt. I had:

1. EEG-normal

2. labwork-no syphilis (? I didn't ask for this test! I guess he thought my neurologic symptoms could point in that

direction)

-no lead, mercury or arsenic poisoning

-TSH was really low at 0.06, which I had already lowered my thyroid dose pretty low in anticipation of summer

heat, so don't know why it is so low

3. sleep study-told I slept 2 hours and 45 minutes the whole night, with no REM sleep. They ended the study at 5 a.m.

and I told them I dream from 5 - 7 am, so they missed it.

drum roll......

4. MRI of neck showed I had just about everything wrong you could have, but most importantly, was the cervical stenosis. There were three areas where the discs "pushed" in on my spinal cord.

I asked my neurologist if this could be contributing to my POTS, and he said it very well could be. He talked about how the vagus nerve is intimately connected to that whole area.

I was kind of blind-sided by this news, in a way. I KNEW I had a bad neck, as my vertebrae "crunch" sometimes, but I was not prepared to find out that my spinal cord is being pressed on. I have no outward symptoms of this.

I know we have talked before of how some people have bad necks. Maybe this needs to be looked at a little harder in research, maybe? I have alot of research to do on my own now. If I knew for a fact that my POTS would go away or diminish greatly with one surgery, I'd do it in a heart beat! But, considering I have no other symptoms other than orthostatic issues, I will have to find any studies I can find that discuss POTS and cervical issues, and go from there.

[nunntrio]

I have that same crunching sound but my neurologist would not look into it. He said "that is just what necks do" ugh!!! Did you have neck pain or any other symptoms with the crunching? Did your Dr. recommend surgery? I can understand how this is a hard decision. I am glad to see you have got a strong lead about the cause of your POTS. I think that is something a lot of us are searching for!! Keep us posted.

[sue1234]

Nunntrio--I actually have no neck pain except when I sleep on my left side. Then it wakes me up and I roll over.

A few years ago I had some really loud *POP*s when I would roll over in bed. I remember being really still to see if I had any pain or lack of feeling in my arms and body. Then I would get an occasional *CRUNCH* sound, and still do. I have no pain or weakness. The only thing I have is POTS.

The neurologist recommended I not have surgery, that advances are always being made, and the longer I wait, the better chance I have for a good outcome.

I totally agree that why have surgery if not necessary, but then he asked what kind of car I drove, as he said I need a good neck support to prevent ANY whiplash in the case of an accident. It dawned on me that he doesn't comprehend how much the POTS has limited my life. That's why I would love to know if this could be causing my POTS!

By the way, as far as my posts from earlier this week, my urine did not turn blue out under the sunlight. I was too much in a daze today with my neck news to even think to mention the blue urine thing to my doctorl

And, I have not gotten my results yet from my Monday labs to see if I have high tryptase, checking for MCAD.

[nunntrio]

I agree that most non POTS Dr.'s do not understand how debilitating POTS can be. I agree that it is worth looking into your surgery options, if for no other reason just to know what is out there. Good Luck and keep us posted!!!!

[sue1234]

I forgot to finish my thought in my last post. What I meant was when he asked what kind of vehicle I drove, he didn't realize that I can't drive. That's why I said he doesn't understand the impact POTS has on my life quality.

I've thought I might go see an orthopedist and get a different perspective. I have lateral scoliosis(mild), but awful posture. I would like to see if the posture is forcing my neck forward and too curved, thus causing the spinal stenosis. If that would be the case, then maybe addressing my whole spine instead of the neck could help my neck situation in the long run.

[Dizzysillyak]

Sue,

I wouldn't consider surgery if I were you .. not until you've tried some holistic treatments.

I have bad neck and shoulders due to 4 whiplash injuries and one concusion from being thrown into 3 feet of water onto my head. For 16 + years these areas were in spasm most of the time but now it's gone. I'm not sure what helped since according to the internet, a large varietyof things will help this. Like fish oil, the low oxalate diet, an anti inflammatory diet, Virastop, Calcium / magnesium, etc etc ... This is a list of what I'm doing, but there are other treatments. I've never tried the glucosamine / chondroidan (sp?) ...

The chiro, electric stem and massage treatments I had all those years never lasted very long ... 24 hours maybe ?

BTW. What's up with your sleep ? That makes a huge difference in my pain levels ... Have you tried 5HTP or theanine ?

[MightyMouse]

I would just like to add my own cautionary tale. I have really bad cervical stenosis. I've also had surgical repair--and because we didn't know that I also have a collagen defect, I had a terrible outcome of my first surgery at c5-6--the graft never mended with the surrounding bone, and actually collapsed. I had a 2nd surgery seven months after the first one, this time taking the graft out of my hip. I was out of work well over a year. And, most importantly for you to note: fixing the spinal stenosis issued did not change anything for my POTS and NCS issues, it only helped with the pain, numbness, swallowing and digestion.

It took me about a year or two to really process what happened to me because I was simply in survival mode when the graft broke. I didn't cry, worry, get upset, I just came up with a plan of attack. Months later I started freaking out because I realized how close I was to dying. The graft broke into shards of bone, which thankfully shot out away from my spinal cord when it broke. I heard it collapse--make a horrible pop, then crunching, and then I started feeling like I was spinning and falling even though I was stilling still at my desk, having just returned to work only 3 weeks earlier. When I think back on it now, it still upsets me, and I have a sense of amazement that I'm still alive, but also now have some fear and anxiety about medical procedures.

I would also like to share with you that before I opted for surgery, I tried EVERY less invasive procedure first. Physical therapy, occupational therapy, speech therapy (for the swallowing problems), epidural shots with steroids to try to improve the inflamation of the spinal nerves, disc, and cord, ice packs on my back and neck, exercises, pilates, inversion, accupuncture, etc.. I wore a soft collar to sleep in, then advanced to a hard collar to sleep in. It was only after I exhausted all options that I went on to consider surgery.

All this being said, there still remains the possibility that your spinal problems could be the cause of your symptoms... my only suggestion to you is to proceed with great caution, but keep your hope going, and investigate each thing you try to make sure you understand the side effects or possible bad outcomes.

Nina

[sue1234]

Regarding sleep, I've slept bad like that for probably 10-15 years. I sleep a little bit better at home, but am awake alot at night tossing and turning. I tried 5-HTP a couple of years ago and it made me so hot, and that is already a big problem with me, so not again.

I am not rushing into any decisions. I really want to get alot of opinions and sit on it. I have had bone issues since childhood, but nothing that ever caused any pain or anything, just "curvy" bones here and there(nothing anybody would notice except on x-ray).

[sue1234]

Nina--thanks for your story. That is the kind of stuff I would like to know, that your surgery did not help your POTS.

The only thing is, is I've gotten to the point that I can't sit in a regular chair anymore, so have to sit in recliners or lay on my side. I don't know why, but when I do, it feels like a balloon blowing up in my upper abdomen that presses on my chest, and then I feel pressure in my chest, neck and head as a result. Then I feel like I am going to faint. I've had this for two years now, and am wondering if the whole spine is now curved so much that sitting upright is having my torso kind of crushing together. I guess I need to see an orthopedist.

[Dizzysillyak]

http://www.vitacost.com/Natural-Factors-5-HTP

I've tried 3 different 5HTPs and this is the only one that works for me. IMHO, it's very important to start this slowly. I took 50 or 100 mg the first time I tried this and it felt like my brain froze up. I was considering calling 911, but waited it out instead ... ... The next time I tried it I ony took 25 mg and was fine. Now I go from 50 mg - 300 mg depending on my insomnia. I think part of the reason I can sleep some nights and I'm wide awake other nights is from my hormones since I have hot flashes.

After I wrote my other post, I remembered that I have lower back / right hip pain that hasn't responded to anything I've tried. I have a disk problem that I really need to have re-evaluated ... getting old is **** ...

[juliegee]

And, I have not gotten my results yet from my Monday labs to see if I have high tryptase, checking for MCAD.

Hey Sue-

Sorry to repeat myself, but I want to make sure you understand. High tryptase is indicative of mastocytosis (not MCAD). Low serum tryptase will not rule MCAD out. It will rule out mastocytosis.

Both have the same symptoms and treatments, but they are different. In mastocytosis, you actually have too many mast cells. In MCAD, you have a normal number of mast cells, but they are overly reactive. When mast cells degranulate (in both diseases) many symptoms ensue causing severe illness that is extraordinarily variable.

Sorry about the cervical stenosis, BUT it's anatomical confirmation that something is wrong. I pray that you can find some treatment that will improve your autonomic issues.

Julie

[sue1234]

Julie--I know I keep saying it wrong every time I just in a roundabout way know that I am looking for MCAD, but starting the testing to see if I have too many mast cells. I understand I would also need to do a 24-hour urine histamine, correct?

[juliegee]

Julie--I know I keep saying it wrong every time I just in a roundabout way know that I am looking for MCAD, but starting the testing to see if I have too many mast cells. I understand I would also need to do a 24-hour urine histamine, correct?

I'm glad you get it- so confusing . The test you are doing is a great start to figuring it out/ruling out mastocytosis. A 24 hour urinary methylhistamine test and a prostaglandin D-2 is a part of what my masto doc used to DX me with MCAD. A careful detailed history & clinical exam were equally important.

Let us know what you find out.

Julie

[sue1234]

My labs came back and my tryptase level was normal. It was 6.97(1 - 11.9). So, I guess I'll do the 24-hour urines next.

I also wanted to see what my B-1 and B-6 levels were. My B-1 was normal, but my B-6 was a little HIGH. That was not what I was expecting. I can't find any info on why anyone would have too much when they don't take any supplements.

Anyone else ever had a high B-6?

[luvmykidz]

I have heard about the syphilis test before.. its the gold standard in testing for other disorders. Here is a little info Hope this eases your mind on what the Dr. was thinking

http://www.dcmsonline.org/jax-medicine/200...00/antiphos.htm

It has been known for years that patients with connective tissue disease may sometimes have a biologic false positive syphilis test. Patients with a biologic false positive test for syphilis are know to be at risk for abnormal thromboses and subsequently have been found to have antibodies to phospholipids

[heathcliff]

i also have cervical stenosis and POTS. my neck issues have been with me for most of my life, but i didn't realize they were a factor in so many of my health issues until POTS symptoms became more pronounced. i recently saw a neurosurgeon who thought at least some of my POTS could be alleviated by surgery, and i agree with him. i've no doubt in my mind the two are linked.

like others here, i am trying chiropractic first, changing my diet around to avoid coffee, sugar, grains, and dairy products, and trying anything to avoid surgery. i have more good days following this new diet/chiro protocol, but it hasn't kept me from getting an occasional blood pressure spike (i have the hyperadrenergic form), and even on the "good days" i suffer from a great deal of vertigo, sound and light sensitivity, and exercise intolerance. like others here i sleep poorly, because i'm keyed up on adrenaline all night, and this makes healing more difficult.

so, let's be honest, this is not much quality of life, really!

here it is, documented: *some* POTS suffers report being cured by surgery to correct their neck issues. do a search on this page for "cervical stenosis":

http://www.dinet.org/what_causes_pots.htm

would i roll the dice on an operation, even if it just cured part of what is ailing me? decisions, decisions.

i wish others here who had successful neck surgery could tell their stories, but chances are they are out living life, not thinking about POTS anymore.

[HopeSprings]

Sue - whatever happened with this? I know we've talked about neck issues before, but I can't remember what your final thought were on this. Still think this could be your cause? Did you ever go back to the Dr. who thought it might be the cause? My neck is in my top 5 of possible causes, but what are we gonna do - have neck surgery to try and find out?? Scary. The first places I *feel it* when I get out of bed in the morning are in the back of my neck and head, and then my heart. I know people with spinal cord injuries often have dysautonomia. Could a lesser neck issue cause all this dysfunction? I wish the answer was more obvious. Did your symptoms start after the "pop" ?