My Non-Pots Doctor Appt. Today

[sue1234]

I went to an ENT today because of a neck issue I've been having for a couple of years and just needed some reassurance it was nothing bad. I had brought my MRI copies for him to look at if there was anything useful in the pictures. My neuro had had me do a head and neck MRI last year. the neuro had found cervical stenosis and said I don't need to have it addressed surgically--just to watch it and maybe at some point in the future I might need surgery to fix it.

Well, as my first appt. with this ENT, I had to mention my POTS history and that's why I had the MRI images. He looked through them, and then he asked, "Did your neurologist think the cervical stenosis could be causing your orthostatic problem?". I told him that the neuro never really said yes or no.

Maybe I read too much into it, but I swear the way he asked me seemed like he might have been implying that he thought it could be an issue. I doubt doctors like to second-guess another when they are not in the same discipline(such as getting a second opinion), but I feel he was trying to say that HE might have thought it could be related to my POTS issue.

I guess I will send a message to my neuro and point-blank ask if they think the stenosis could be contributing to the POTS.

I have been to many doctors, and my two favorite and caring ones are both not available to be a primary. One was my gyn and then now an ENT.

[Noreen]

I know you are having problems with old forum searches so I did this one for you

http://forums.dinet....p=forums&st=125

Cervical stenosis got me back to 2004. I haven't had a chance to read them all but they will probably interest you, especially this one -

http://forums.dinet.org/index.php?/topic/1605-connecting-neck-to-the-autonomic-nervous-system/page__p__14072__hl__%2Bcervical+%2Bstenosis__fromsearch__1#entry14072

[lieze]

Wow this could be the missing link you've been searching for.

I'm excited for you.

[HopeSprings]

I am in the middle of exploring the same thing. I have lots of neck issues and wonder if it could be contributing to the POTS. I have been in lots of pain and discomfort for over a week and decided to take another look into this. I found a neuro-surgeon who specializes in the spine and will be making an appointment to see him. He requires the MRI be less than a year old, so I am actually going tonight to get a new cervical spine MRI. I am not confident that he will know anything about the spine/autonomic connection, but I would think if anyone would know -- a neurosurgeon SHOULD. If you ask your neuro that question ...I'd love to hear his response.

[nunntrio]

I am in the middle of exploring the same thing. I have lots of neck issues and wonder if it could be contributing to the POTS. I have been in lots of pain and discomfort for over a week and decided to take another look into this. I found a neuro-surgeon who specializes in the spine and will be making an appointment to see him. He requires the MRI be less than a year old, so I am actually going tonight to get a new cervical spine MRI. I am not confident that he will know anything about the spine/autonomic connection, but I would think if anyone would know -- a neurosurgeon SHOULD. If you ask your neuro that question ...I'd love to hear his response.

Hope it goes well. Let us know if they find anything.

[sue1234]

Reen, thanks for digging up those posts! I really appreciate it. That's what I had been trying to find in our old posts, as I knew plenty of people had neck issues.

Naomi, let me know what you find out and I will post again if I find anything out.

Nunntrio and Leize, thanks.

[lissy]

Hey,

I've kinda keep this is the back of my mind...I had an epidural back in 2001 with the delivery of my 1st child and I was very very ill (don't know if it was dys,or cardiomyopathy) I came home from the hospital with excessive lower swelling weakness and couldn't care for my child for almost 3 months along with that I had a very stiff neck which I couldn't turn it from left to right it lasted 3 months and ever since I had the kinda sore neck can't really bend my head to chest or look completely up without having tightness and pain.

So when I got completely ill 3 years ago I had more neck aching and it has since spread to my mid back spinal area. I did go to my family doc last month and she did an xray and said I had no curve in my neck its straight! Since then I am trying another doc, seems like I have to keep doing that just to get closer and closer to finding my true problems...

Anyway I'm starting to wonder if my neck/back/spine is causing dysautonomia I seen somethings posted with some connections.

I have one possible important clue: my father has a deteriorating spine along with tachycardia he was on a beta-blocker (antenol)sp? and said he felt so much better with the fatigue and chest pains.

SO I guess I'm wondering also if the back sides could be causes the autonomic probs???I'll be soon going to a neuro or orthopedic doc so I'll post if I get some definite answers.

Lissy

[sue1234]

Lissy, definitely let us know if you find out anything. I have the opposite of a straight neck--I seem to have too much forward curve. It wasn't like this 7-10 years ago when I was "normal". So, I don't know if it has just slowly curved over the years and made my POTS show up. I have no clue. Like I told the doctor, I have NO pain in my back/neck or limbs, so I wouldn't have the surgery just to fix it. BUT, if I knew it contributed to POTS, I would have the surgery in a second.

[comfortzone]

I went to an ENT today because of a neck issue I've been having for a couple of years and just needed some reassurance it was nothing bad. I had brought my MRI copies for him to look at if there was anything useful in the pictures. My neuro had had me do a head and neck MRI last year. the neuro had found cervical stenosis and said I don't need to have it addressed surgically--just to watch it and maybe at some point in the future I might need surgery to fix it.

Well, as my first appt. with this ENT, I had to mention my POTS history and that's why I had the MRI images. He looked through them, and then he asked, "Did your neurologist think the cervical stenosis could be causing your orthostatic problem?". I told him that the neuro never really said yes or no.

Maybe I read too much into it, but I swear the way he asked me seemed like he might have been implying that he thought it could be an issue. I doubt doctors like to second-guess another when they are not in the same discipline(such as getting a second opinion), but I feel he was trying to say that HE might have thought it could be related to my POTS issue.

I guess I will send a message to my neuro and point-blank ask if they think the stenosis could be contributing to the POTS.

I have been to many doctors, and my two favorite and caring ones are both not available to be a primary. One was my gyn and then now an ENT.

As you already are - remain focused and vigilant to find truth in this.... & be very wary of any who suggest surgery to decompress your neck. There are theories you can find by googling intermittant cervical cord compression or PC3 - 'positional cervical cord compression' and list it as a co-morbid condition with fibromyalgia and hypermobility and other things - dyasautonomia another I believe. Sometimes you can find you link - maybe copy and paste and send it to your neuro asking if there's an outside chance that your dysautonomia could be linked to the neck issue..... I have some respected doctors telling me my symptoms are from my neck and to have surgery and other respected physicians saying, 'I wouldn't let any one near your neck with a ten foot pole' -- and more doctors on that front than the other - who is just one. It's not fun to have the burden of being your own best advocate by researching and seeing the countries best - or reading their works & trying to come to a decision - it's a temptation to believe your doctor should have all the answers - truth is you have to have a team approach - you and them - both, as your conditions are on the newer end of research and rather rare-ish.......if the docs are worthy of caring for you they will welcome your input - welcome you getting second opinions etc... The symptoms we have stem from different body systems and reasons so the treatment plans can vary widely ... pharmacologic treatments vary widely - as some work in one way - but don't work in another - so finding causation can be really helpful...good luck to you!