Dysautonomia, Cervical Stenosis, Neuropathic Pain & Dysfunction

[jimnick]

Hi,

I'm new to the forum and hoping for some insights and direction with my condition. I've had cervical degenerative disc disease for at least 10 years. The major problems began a few days after a cervical foraminotomy, when, along with POTS, I developed a progressive neuropathy (including numbness, burning pain, spasticity and weakness) affecting the left side of the face, head, neck shoulder and arm, as well as the right lower ribs and upper abdomen. Doctors are simply attributing all of the dysfunction to dysautonomia and telling me they can?t help. I suspect that the neuropathic symptoms (and maybe the POTS) may be progressing due to ongoing cervical spine pathology. While the tachycardia is only triggered by upright postures, the neuropathic symptoms are triggered by both upright posture and head and neck movement (especially flexion) even when lying flat.

Has anyone else had or heard of these kind of problems?

Can anyone shed any light on what may be going on here?

Can anyone recommend a surgeon who understands the potential relationship between cervical spine pathology and dysautonomia?

Any ideas and input would be appreciated.

Thanks,

Jim

[flop]

Hi Jim,

I just wanted to welcome you to the forum. It sounds like your problems have all come on quite suddenly so I suspect you have a lot of questions about day-to-day dysautonmia issues as well as your spinal problems. If you haven't already discovered it there is a comprehensive guide to dysautonomia and specifically POTS on the main DINET part of the website (link top left of the forum screens) - the "what helps" and "what to avoid" sections are particularly helpful. I'm sorry I don't have any specific information about cervical spine issues myself but there are other members who have or have had differing spinal problems and hopefully they will have some useful information for you.

Flop

[jimnick]

Thanks Flop for the welcome and the suggestions. I have been through all of the DINET site and found the information helpful thus far.

Jim

[doctorguest]

Some of the problems that you describe (pain on flexion/extension of the neck, paresethesia in the shoulder and arm) do sound as possibly related to cervical spine issues. Have you had workup with MRI of the cervical spine and EMG to evaluate your symptoms? Autonomic dysfunction is sometimes known to occur after a major surgery, so it may be a separate problem, unrelated to the spine issues. In any case, you need a good evaluation from both neurologist and a neurosurgeon, and I suggest traveling to a major academic center equipped to help you (i.e. Cleveland Clinic, Mayo Clinic, John Hopkins, Vanderbilt).

[DancingLight]

Jim,

Welcome to the forum.

The connection b/w POTS and Chiari/Cervical Stenosis is a complicated and controversial one. However, I am one of the folks who believes strongly in it and so does my ANS doctor.

It is VERY interesting how you have noted that flexing the neck/neck movements trigger symptoms. And you have clear evidence of cervical stenosis.

Soooo, there are some techniques to use in PT that can sometimes help relieve the lack of 'give' in your neck--using neural tensions, cranial sacral therapy, myofascial release etc. You would need to find a good manual therapist. This in many cases can lead to improvements and also take away the need for surgery. One other woman on this site, Mack'sMom/Julie has also done this type of PT. I have posted in more detail about it and if you are up for doing a search for 'neural tensions' and DancingLight you should be good to go!

The topic of the connection b/w POTS and cervical stenosis and also Chiari have been discussed in great detail on this site and with a search you should be albe to get quite a dose of differing opinions and experiences. Try a topic search for 'cervical stenosis' or 'chiari'.

If you still have questions, come back and ask more!

As for a surgeon, Dr. Dan Heffez in Milwaukee, WI has done surgery on many patients with Dysautonomia, FMS, and CFS who have cervical stenosis. He has also written articles on this. This is who I would recommend seeing, and I would be interested if others (as there are several) on this site who have seen him would agree. (A search for Heffez on this site will also get you hits).

I get a barrage of ANS symptoms from neck movement. I struggle to even lie on my side or in most positions b/c it is as if my neck will not 'give'. Originally, given my strong family history, we suspected that I had cervical stenosis. When I did not respond to PT or to any medications we realized something different was going on. My MRIs came back clean as a whistle, and even after being examined by Dr. Heffez he did not think that there was any myelopathy or, as my doctor suspected, possibly just a narrower than normal spinal cord (leaving not enough room for the nerves to 'give').

In the end, we are now treating me for Lyme disease and it is working. You can argue one way or the other on such controversial topics. As my ANS doc said to me. A cervical stenosis doc/surgeon would say why waste time treating for Lyme when you need surgery for the stenosis. A Lyme doc would say why risk surgery when you might have Lyme. This is the crunch we were in but then found there was NO evidence for stenosis in me, so another cause was pursued.

However, the neck pain and ANS flares I have mimic exactly what my doctor sees in patients with stenosis. When I had my PT eval. I felt like I was back on the tilt table the ANS symptoms were so severe as he tested for movement restrictions.

As is always said here, surgery is a LAST resort and other avenues, esp. PT need to be explored first. But, there is definitely a link b/w cervical stenosis and POTS>

Hope this helps!

Emily

[jimnick]

Thanks all, for the comments and suggestions. I have been doing some research the past couple days.

Yes, Doctorguest, I have had quite a bit of diagnostic workup, including MRIs and myelograms demonstrating the cervical stenosis (central and neuroforaminal at C5-6 and C6-7). I've had SSEP and EMG/NCV, indicating damage in the cervical cord and brainstem as well as C5-6 radiculopathy. I've also had an autonomic workup verifying the POTs and an adrenergic sudomotor deficit of the preganglionic type. In other words, the testing is demonstrating dysfunction in several areas (autonomic, sensory and motor), which was clear from the symptoms. The main concern is that, in addition to the POTS, the neuropathic symptoms (pain, sensory and motor deficits) have progressed at an accelerating pace over the 16 months since the original cervical surgery and have become increasingly sensitive to non-neutral head and neck positions. So, yes, I definitely think there's more going on than dysautonomia. If I could just get the neuropathic symptoms ameliorated, I would be in a much better position to rehabilitate myself and get some improvement in the POTS.

I have always been an extremely active person and am a big believer in physical therapy. Thus I have diligently maintained a home physical therapy regimen (and was even swimming until March), but I have had compounding setbacks and am currently quite incapacitated. I am going to look into some type of manual physical therapy (as you suggested Emily), if I can get it arranged at home. Since my condition has progressed to such a state of incapacitation, despite my own rehab efforts, I feel I really must find a knowledgeable neurosurgeon who is not afraid to take on a complex, iatrogenic case (are there any out there?). On that note, I have done some more research on Dr. Heffez and have tried to contact his office over the past couple days. Strangely, no one is answering the phone there. Dr. Heffez Office

I'd be appreciative of any additional suggestions on neurosurgeons or other advice or information that may be helpful.

Jim

[1pl8ump]

i have to say, my wife is a 'tweener (POTS & NCS, thus said by CCF as well as Dr. Grubb); she also has EDS- Hypermobility, Hemiplegic migraines. w/all that said, Dr. Heffez may be on vacation right now (summertime, you know how that goes). keep trying for him though. when he was @ hopkins, he is known as probably the top neuro in the country especially @ reading films. we live in VA, and i sent him my wife's films w/no questions asked. he is top notch. she also has small fiber neuropathy as tested by CCF. Dr. Kamal Chemali is in charge of that for her and she sees another neuro there for the migraines. if you want answers, you have to go to bigger facilities that deal w/this stuff day in and day out.

[MightyMouse]

Dr. Heffez no longer practices in Chicago, so the link you have is an old one.

Dan Heffez, MD

Milwaukee Neurological Institute

4550 2350 W. Villard Ave

Milwaukee WI 53209

(414) 438-6500

[Maxine]

Jim,

The web site you posted on Dr. Heffez is an old address. As you can see Nina posted the correct current address. I still keep in touch with Dr. Heffez giving him updates of my condition. I have seen him several times, and I believe Corey is correct in that he is one of the most highly esteemed neurosurgeons in the country. He did my cervical spine surgery in 2002. He did an excellant job, but at the time I was not aware I had EDS, so I ended up with complications 6 months to a year later. HIS surgery went fine, and the area he did the diskectomy/fusion on--(c-5, 6, and 7) is still fine, but the instability above and below that area got worse. Of course Dr. Heffez, nor I knew about the instability either. I did not learn about this until I went to NY to visit the Chiari Institute. Dr. Heffez also diagnosed congenital cervical spine stenosis, and a mild chiari/small posterior fossa, with a prominant vertebral artery adding pressure on the brain stem.

Both neurosurgeons in NY are very good, but I have chosen to go another route, as the expense is too much for me. Fortunately, for me, there are other choices. Dr. Bolognese, and Milhorat have helped folks with chiari, and chiari related disorders. Dr. Bolognese did another set of MRIs and said I had a retroflexed odontoid bone----(c-1/c-2)----cervical/cranial instability, and that it was putting pressure on my brain stem. At the time he didn't know how much. He agreed with Dr. Heffez in regards ot the mild chiari, but did not mention the congenital stenosis which tests prooved as significant. I was sort of on the fence about the instability, but the NY docs also said I had hypermobile EDS, and the instability seemed logical. As time moved on, my instability became obvious-----------I COULD FEEL IT. My neck is just not supposed to be HYPER-mobile, nor is it supposd to move in the directions it moves in.

I saw othet NSGs for more opinions, and most sort of blew off these issues as minor, and "nothing to worry about". One neurologist said all of it was manifested in my mind---- I went back to Dr. Heffez, and he was not really convinced on the instability, but he said my cervical stenosis was getting worse, and causing myelopathy. He was NOT dismissve of the EDS, but I don't think either of us knew the impact the EDS was haivng on my spine yet. As I learned more, he learned more. He suggested surgery--(full laminectomy/fusion from c-3, and down to c7) to correct the stenosis. However, with the increasing instability above that area, we opted to put surgery on hold until I get a better handle on where the instability is coming from.

He told me I was welcome to come back to see him any time. I think he now realizes the EDS is making a mess of things, and he understands why I'm reluctant to have the laminectomy, and also knows we have to change direction. I love his surgical skills, and wish he could do the surgery--------------the guy is meticulous, and I wish it was as simple as getting a laminectomy, because I know he would do an excellant job.

Very recently I saw an orthopedic surgeon recommended by my EDS doctor. This past fall I saw an EDS doctor/geneticist who is an expert in EDS/connective tissue diseases, and he said I definately have EDS hypermobile type with vascular and skin involvement. I was surprised he recommended that I see a surgeon---(actually the other EDS doctor who took over for him, because he accepted another position somewhere else) recommended the orthopedic surgeon. Both are expert EDS doctors/geneticists, but the newer one also has his PhD. Both were very concerned with the instability, and thought the EDS had a lot to do with it. I saw the orthopedic surgeon on June 28th. He agreed with both Dr. Heffez and Dr. Bolognese. He said the stenosis is getting worse, and I indeed have significant cervical/cranial instability.

I asked him to explain more. He said because I have pannus growth---(AKA tissue growth) on the odontoid bone means there is friction, and this could only come from instability. (WOW----------------all along I knew it, and he repeated the same words I have been using to try to convince a couple local Docs.) It's common sense. He is also very conserned with the stenosis, and said Dr. Heffez was correct about the myelopathy, and said it getting worse. Next step-----------more MRIs----this time my whole spine.

I apologize for the length of this, but as you can see I'm almost on the same page your on. This stuff is overwhelming, and upper cervical spine problems, and brain stem compression can make a person very sick, and very weak. The EDS only compounds the problems. This orthopedic surgeon also has great knowledge of ANS dysfunction. What a beautiful day it was to have all that common sense around me. Dr. Heffez is also a good one for both neurosurgey genius, and common sense.

I believe you would be in great hands with Dr. Heffez. Dr. Heffiez is the reason I love Chicago. However, he's in Milwaukee now. But Chicago is only an hour from it--- I'm only about 4 to 5 hours from Chicago, and never realized what a great city it is. I love lake Michigan. I also think he is learing more and more on EDS.

Take care Jim, and good luck on your path to healing.

Maxine :0)

[DancingLight]

Jim,

I'm really glad that others with more direct contact and experience with Dr. Heffez chimed in.

Corey, wasn't your wife also a patient of Dr. Rowe at one time?

Oh, and Jim, the PT for the neural tensions is very specific and someone like Dr. Heffez would hopefully know the best type of manual PT for you--it is something very different than most PTs every practice.

And, Maxine.....Milwaukee is a fabulous city!

Later alligators!

Emily

[Maxine]

Emily,

I wish I would have gotton the chance to see Milwaukee. We drove straight through, and stayed at a hotel. Didn't see much except the highway-----

It was a bad night, and we went straight to the hotel. I shook so bad, and my heart rate was high----even on the beta blockers.

My body finally calmed dowwn, but I still didn't sleep well. When I got to Dr. Heffez's office I thought my heart rate was high, but was surprised when his RN practioner told me it was only 60bpm. It was this appointment that I found out I have myelopathy from the congenital cervical spine stenosis.

I wasn't very happy to find out it's getting worse compared to my appointment then, and the appointment I just had on June 28th.

The traffic coming back through the Chicago freeway was terrible. We sat there for 3-4 hours.

I would love to visit Milwaukee just for fun sometime. However, I love Chicago, and don't know if Milwaukee will compare--

Besides, Harrison Ford if from Chicago.

Maxine :0)

[jimnick]

Thanks to all for the input and for the contact info on Dr Heffez. I've not been online for a while due to computer problems. In the meantime, I did contact Dr. Heffez in Milwaukee and have an appointment to see him. Thanks Maxine for the heads up about EDS as a possible complicating factor in surgery. I'm not aware of having EDS. I am rather flexible and been told by one doctor I have slightly hyperextensible skin, but I can't say I meet any of the other criteria I've read about. I'm also very slender, but haven't determined if that is typical of EDS. Am I reading correctly that there is no definitive test for the hypermobility type of EDS?

Jim

[DancingLight]

Jim,

I am glad you have an appt. with Dr. Heffez to explore the possible links b/w your stenosis and dysautonomia.

As for your EDS question: If you mean by 'definitive diagnosis' something like an actual genetic test, you are right, there is none. HOWEVER, I think that a geneticist, especially one who specializes in EDS can make an excellent CLINICAL diagnosis. I was misdiagnoses by an EP/Cardiologist as having EDS III and later found out, from a geneticist, that while I had a few characteristics of EDS, I in no way HAD EDS and it was NOT the cause of my Dysautonomia. It was well worth clarifying, in my mind!

Hope this helps.

Emily

[MightyMouse]

Jim, even if you DON'T have EDS, additional herniations of discs above and below ANY spinal fusion is a well known complication. Basically, when you freeze up one joint, it changes the way your spine must carry it's load of work, and those changes can provoke further problems.

I am fused at c5-6 and have developed multiple herniations above and below the surgical fusion, as well as herniations in my L and T spine.

My best suggestion to you, if you're considering surgery, is to consider how much pain you're in, how progressive the problems are, who limiting the issues are to your daily functioning, and how much you've attempted non-surgical treatments like steroid injections, physical and occupational therapy, regular home exercise regimen, etc.

Nina