Could this cause dysautonomia?

[DSM3KIDZ]

I'm not sure how to word this so bear with me. If your spine has problems than does that affect the nerves that are not functioning correctly? The brain recieves signals to the nerves through the spine right?

Well I was looking at my medical records and it states

"mild to moderate uncovertebral spurring at C3-4 and C4-5 with mild-moderate right neural foraminal stenosis, normal spinal crod. No canal stenosis. MRI of thoracic spine disc protrusions at T4-5, T7-8, T9-10 and T10-11, most prominent at T7-8 where there is a moderate left midline extrusion resulting in mild mass effect on the left ventral thoracic cord, but no cord edema"

I even had a doctor ask me if I've been in an accident and I haven't.

I wasn't even told about this till I got my medical records and it had a dx: of cervical spondylosis, mild. And dx thoracic disc protrusions.

If their is pressure on the nerves couldn't this be causing some of my symptoms (nausea, migrianes, dizziness, shoulder pain etc.?)

I feel like my body is falling apart and I have no idea why.

If anyone is familiar with all this MRI stuff do you know if any of this can be resolved or could be causing my problems?

Thanks all

Dayna

[Guest Julia59]

Dayna,

I know that upper spinal problems---(cervical spine) ---stenosis, malformations--ect. have been linked with ANS dysfunction. Many patients with cervical spine or chiari malformation/chiari related conditions have a very difficult time getting a neurosurgeon or neurologist to take them seriously. As you can see on my signature line I have a lot of problems in that area---but have had two opinions from NSGs saying I need surgery, but one said I need surgery in the cervical/cranial area---by doing a fusion for the instability, and the other said I need a full cervical laminectomy from c3 to c7 because of stenosis and herniated disks.

I have already had one surgery for two herniated disks in June 2002 for herniated disks between c5-c6 and c6-c7---and fusion with titanium plating. My ANS symptoms did improve---I could even handle the summer heat better. But unfortunately my EDS came into play, and the problems above and below the fusion dramatically got worse---and my ANS symptoms came back slowly over the course of 2003 until present. I wasn't at a 100% after my surgery, but I was able to go back to school, and start looking for a part time job as I felt more functional.

Now I am at a full POTS crash, and my spine in in pain all the time. I was told that I am developing myelopathy. The NSG told me it will only get worse over the course of time, and said I could put myself at risk for permanant dmamge. Dr. Dan Heffez did my cervical spine surgery, and diagnosed the recent myelopathy, and Dr. Bolognese from The Chiari Institute in Ny diagnosed the rest of my problems---but Dr. Heffez also agreees with the chiari-0---or the small posterior fossa, and believes that may need to be decompressed as well. My thoracic spine is in a lot of pain also---and to me that feels the most disabling, as I can't even pull a door open in a departmant store. It has just left absolutely no strength in my upper body.

Saturday we had company----it was so nice to see our friends who we have known for over 20 years now. My husband did most of the cleaning the night before. The day we had the company, I made a layer dip, and another vegetable dip------and got it ready to serve. That was it------and my back felt like it was ready to split wide open, and my OI issues were at a peak---and my heart raced all night. I refused to let it get the best of me and was determined to enjoy my company.

YES----definately----- anyone with upper spine and cranial problems will have some form of ANS dysfunction.

Sorry to ramble---you caught me at a bad time.

Julie :0)

[dizzygirl]

Hi..

I have to agree that I think spinal issues can play a role into dysautonomia.. For me personally I have some things going on with my cervical spine.. and am in the process of making plans to going to the chiari institue.. where I am hoping that a neurologist will take me seriously!!

SO yeah I think that the spine and stuff really plays a role in dysuatonomia...I hope that you can find a doc to help you sort thru all the test results... as far as resolving the issues..again agood doc is in order..

good luck to you

hey I just saw that you are in Milwaulke.. there is a neurosurgeon there..(a doc thru John hopkins recommended that I go there as well as a few potsy pals) Dr. Heffez.. I see Julie brought him up too.... i have not seen him as of yet.. but I hear he is pretty good.. maybe he can be of help to you?? I have his contact infor around somewhere.. I will find it an PM it to soon

hang in there!

[Guest Julia59]

Here is a link to Dr. Heffez-----------------------------

http://www.nfra.net/Dr.%20Heffez%20Information.htm

Also, here is a link to The Chiari Institute;

http://www.chiariinstitute.com/

Scroll down to the bottom of the Chiari Institute page and click on the =----"watch here" section of the EDS Box. This is a video that mentions chiari/pots/eds-----very interesting---and a big eye opener.

Julie :0)

[dizzygirl]

Julie that is a pretty neat video link!!

I had abit of trouble w/ it loading.. but got to hear about 5 minutes of it.. Boy I so need to ungrade my computer!! LOL

[DSM3KIDZ]

so you guys think I should see a second opinion re: this issue? Based on my MRI's does it look bad compared to the info you gals have?

I have no pain except for shoulder so I thought this might be a non issue.

Hang in there and thanks for the ifo. I'll look into the Dr.

Dayna

[MightyMouse]

I am a former patient of Dr. Heffez. I would caution you about assigning a causal relationship with ANS disturbance and spinal issues. There is emerging evidence that there is some kind of linkage especially with EDS and Marfan's patients, you must keep in mind that it is possible that the things co-occur and not necessarily that one causes the other or vice versa.

Following my surgery, I had no change in my autonomic problems. Rather, I had resolution or partial resolution of my neurological symptoms such as weakness in my extremeties, shooting electrical pains, numbness and burning sensations, swallowing/aspiration problems, etc.

Nina

[Guest Julia59]

Nina is correct----their should be caution with anything to do with relating spinal problems with POTS-------I would never recommend a patient to a NSG unless I suspected severe problems---and really that is only for a NSG to decide. But most of the time when I have ever discussed this with anyone---they have already had MRI films with pretty severe abnormalities. I posted those links to help educate the full spectrum of all of this---as it it much more complicated.

I have had a lot of communication with many chiari/spinal stenosis patients and the majority of them have POTS---or other ANS dysfunction---some get a resolution of symptoms---or partial resolution, BUT SOME GET WORSE----ESPECIALLY IF THEY SEE AN INEXPERIENCED SURGEON---that does not have a lot of knowledge of POTS AND EDS.

HAVING SURGERY DOES NOT MEAN YOU WILL NOT HAVE POTS.........

Many times surgery can create other complications. That is WHY I am taking such a long time to decide what is right for me.

I'm one who did do better after surgery----BUT symptoms came back. I had EDS---and many other complications with my spine and cervical/cranial junction. It is very difficult for neurosurgeons to get these type of surgeries perfect also. There is so much more to it then that.

If you are certain that your spine problems are related to your POTS after seeing a qualified NSG that is familiar with POTS, EDS, and spinal issues---I would take a good hard long look at the quality of your life. A lot of the time NSGs will not confirm a relationship between the two---as there are times where they can co-exist---or perhaps permanant damage is done and a full recovery is impossible. If you have fairly decent function---I would not have the surgery. If you have other problems such as myelopathy or other indications that you have a moderate to severe amount of pressure on your spine----well---you don't have much of a choice but to have surgery---as permanant damage and spinal injury could result.

I want to be certain that my myelopathy is caused from my spine or cranial/cervical instabiltiy before I decide on surgery. My gut tells me I probably won't be able to avoid it----and i'm not expecting my POTS to be gone after surgery----if I have some improvement on POTs symptoms---it will be a bonus.

SOME PEOPLE HAVE HAD GREAT IMPROVEMENT OF SYMPTOMS. I have talked with many of them. Complications can arise with cervical/cranial junction surgeries----and only the most experienced surgeons should be seen if that is suspected.

I NEVER tell anyone that surgery will fix their POTS----but I have run accross some people with very severe chiari conditions/upperspine compression---and most of them have very severe POTS or ANS dysfunction----especially in cases of brain stem compression. Cognitive function that is depleted---sleep apnea---vision disturbances--they usually have other problems in conjunction to ANS symptoms. And most of them can't control the tachycardia fully with beta blockers.

I believe you don't have the complications outside of your POTS that would indicate any spinal compression.

Getting more then one opinion is best. Dr. Heffez is quick to point out that surgery is not a cure------it depends on many factors.

Julie :0)

[MightyMouse]

I do have to say that I respect Dr. Heffez because he is very conservative--only offering surgery as an option IF, and only IF, you've tried all the less dramatic and invasive options AND he feels your case is one he might be able to help with.

Unlike Julia, only my nerve impingement symptoms got better--have have since returned b/c I've had further disc hernation. Also, my surgery had major complications--my bone graft collapsed, shooting bone shards all over the site and requiring an emergency surgical repair (in other words, I had a broken neck, literally). The 2nd surgery was much harder on me than the first, with a graft taken from my hip.

My only suggestion to folks with your type of MRI findings is to find a doctor you trust and to try non-surgical options until you've exhausted all of them before considering letting someone operate on your spine.

Nina

[cmtaylor5]

Hi,

Both my neurologist and electrophysiologist think there is a link between my cervical issues and my POTs. I went to physical therapy and I get injections of saline in my shoulders every three weeks to loosen up my muscles. Nobody has ever suggested surgery to me.

My POTs is under control now, and I live a pretty normal life, so I'm not sure if the link is real or not, but I know I felt better shortly after I began PT (but I also started on beta blockers close to the same time). I also have a big decrease in chest pain (I get the kind that is centered over my heart) after successful PT and injections.

My electrophysiologist is very interested in the connection between my neck injury and my POTS. If the office hasn't heard from me, they call every 3 months and ask how my neck is.

Carolyn

[dizzygirl]

I just wanted to clarify that for my case I think that there are some cervical as well as other things going on that are contirbuting to my individual case...and everybody is different .. your spine issues could be unrelated to things or not unrelated.. but in any event finding a good doctor to really look into your MRI results would be a good thing..

good luck

[janineerrn]

Hi,

Just a note on chiari malformations. The cerebral tonsills always move. They are suposed to. The problems come when they herniate and restrict blood flow to the brain. This has its own group of symptoms. Some are similar to POTS symptoms because it involved the nervous system.

I have had many head MRI's and CT's. I was told i had chiari, I was told I didnt. I was working at a hospital where there is a doc who does the surgery to correct chiari malformations so just about anyone who went to a particular group of doctors that had slightly abnormal MRI's were sent to this Doctor. You cn get stuck in a mindset or the current trend depending on what doc has done what current education or certification.

I know 1 person who had the surgery and was cured and loves this neuro. I know of at least 10 others who have had no improvement or became worse after the surgery. I seen 2 patients come to triage at the ER when I worked there that had the surgery recent and died within an hour of arrival to the ER.

Im not trying to freak anyone out here, any surgery is risky, (Im stressing about my tonsills in my throat). Add POTS on top of it and the risks are higher.

BE CAREFUL.

I guess my point is before you have a neuro go reaming out your brain, Have multiple head mri's and get opinions from docs outside the loop, and bring your films with you to other docs to interpret.

I would be the first one in line to have my brain reamed out if i knew it would stop this maddening disorder. I was diagnosed with POTS and now I have bone spurs popping up on my spine and my hips and my shoulder. Is it part of POTS? Meds? or something totally unrelated?

Peace

Janine

[DSM3KIDZ]

Thanks for all your imput. I have NO intention to get surgery. I was just curious what all your imput was re: my MRI. I was just shocked that I was unaware of the report. They told me mild sparring at C4-5 and disk buldge at T7-8 and left out all the other information.

Like I mentioned in my last post I don't have any back pain except for the right shoulder/neck which also seems to be a symptom of pots.

I'm just amazed that I have so many findings and haven't been in an accident of fell or anything. Does anyone know what causes this kind of thing? Does it keep getting worse over time?

Dayna

[Sunfish]

just a general comment re: MRI abnormalities such as bulges & the like....MANY people in the "normal" population have such abnormalities but never know b/c they have no reason to be tested. very often they cause no symptoms. this is increasingly true as people age (though possible at any age). obviously this is not always the case. some things are caused by progressive conditions, injury, etc. i'm not speaking to anyone's specific results....just a general FYI to keep in mind.

melissa

p.s. as it's in my signature that i have a cervical fusion, for those who don't know mine was a direct result of and injury caused by my fainting and subsequently falling (not so gracefully) down a flight of steps. so....a different variety of the dysautonomia/spine issue relationship. and NOT one that i'd recommend

[MikeO]

On 2/27/2006 at 5:58 PM, MightyMouse said:

neurological symptoms such as weakness in my extremeties, shooting electrical pains, numbness and burning sensations, swallowing/aspiration problems, etc.

Well add this to my list as i have mild to severe Cervical spondylosis. I do have to agree not having any spine surgery as it does carry some degree of dissatisfaction so hoping that PT can help some of this out.