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dano2718

Cervical Spinal Stenosis Hypothesis?

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Just to preface, this may be controversial to the medical system now, which is appropriate because it is new and not entirely well understood, but I can't help but wonder if this doctor is on to something...

I was thinking about the commonality between my father's chronic fatigue later turning into muscle aches in the neck, shoulders and upper back. We both have osteoporosis (and I'm only 32 years old!) and my fatigue / POTS has been turning into muscle aches in the same areas.

I am seeing some overlap in symptoms with POTS, EDS, Chronic Fatigue, Fibromyalgia. There's a surgeon who believes that some patients who actually have compression of the spinal cord in the cervical (neck) area may be misdiagnosed with having POTS, CFS, and Fibro. The surgery he performs has helped 88% of his patients:

http://www.pressenter.com/%7Ewacma/wallstreet.htm

It seems almost obvious, in a simplistic way, that symptoms of autonomic disregulation that don't progress to autonomic failure could be caused by a chronic mechanical insult to the spinal cord.

I don't mean to tell anyone to go out and get a surgery done which could be risky and unsuccesful, but I would like to see POTS investigators to look at further research and validation of such a hypothesis.

Does anyone else suspect this may be related?

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Guest sonotech

Is that the same as Chiari I malformation? If so, there has been some correlation between it and POTS. There is a web site on this .....somewhere.

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this topic has come up many, many times here before. I will give you my standard caution that very few people who have dysautonomia and have chiari or spinal surgery have their dysautonomia symptoms go away. As someone who had 2 surgeries with Dr. Heffez, I can tell you the surgery took away my pain, improved my nerve function/sensation in my hands, swallowing, but did NOT improve my POTS, NCS, or EDS issues. Nor did it improve my fatigue in any way.

The sites your are looking for are listed within the "help yourself to answers" post that I have at the top of this forum.

http://dinet.ipbhost.com/index.php?showtopic=1954

Nina

okay, on second look, not all the links are there

you can find info on the wacama site, as well as calder's site, and a few others

http://home.att.net/%7Epotsweb/POTS.html

The links to articles about spinal decompression are listed in the thread

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MightyMouse -

As a newbie, I really appreciate your post - I figured this may have been discussed before but couldn't find it in the new message board. It's good to hear from someone who has experience in this. I think it still is a part of the puzzle, but naturally I may be overly enthusiastic to hope that there is a "cure". :rolleyes:

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If I remember correctly the guy named banner, wasn't he on the same episode of 20/20 that talked about the "Cure for chronic fatigue" with this surgery? and another blond woman some of us know from up north?

I remember hearing later that an ABC executive REFUSED to use the word "dysuatonomia" as nobody would know what it was and it wasn't a "sexy word." ?? But used CFS terms?

Thankfully, Dateline did a story about the surgery and dysautonomia. But I have YET to hear of anybody with all symptoms resolved..and many pts go on to have REPEATED surgeries for repair, problems, repair...lather, rinse, repeat.

It's very sad the repeated sugeries and errors of doctors.

Even worse, NEITHER show did a FOLLOW up show to allow folks to see how the pts were doing. TV made it sound so easy to "just go in and get the neck cleared up." :rolleyes::):)

While I appreciate the pioneer spirit of those who had the surgery, I would never see it as a cure for fatigue or POTS. too many underlying variables.

Glad it helped you, Nina.

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Guest Julia59

Chiari and chiari related conditions are very complex, as is congenital cervical spine stenosis.

Unfortunately due to the same ignorance in the world of chiari related conditions as there is in the world of dysautonomia---there aren't many experienced neurosurgeons in this area. Those physicians that dare to help folks with Chiari Malformation, and congenital cervical spine issues often suffer the same kind of ridicule we do from other "medical professionals", and laypeople.

Yes, ANS symptoms may be improved---if in fact the two are related--(chiari related conditions and POTS---ANS dysfunction.) BUT----it's more likely that surgery will more likely stop the PROGRESSION of symptoms.

Actual improvement in ANS symptoms is usually for those who have not really suffered significantly with ANS dysfunction in the first place---milder symptoms, or they may have never noticed any symptoms of dysautonomia at all. I suspect permanant damage is done to the ANS or CNS, the longer the compression on the spinal cord or brain stem exists---or the severity of it.

Dr. Heffez told me directly that if I choose to get the laminectomy done that he suggested that I would most likely only see the progression of my symptoms stopped, but he didn't completely rule out the chance that I could show some improvement in my ANS symptoms. I have congenital cervical stenosis throughout my entire cervical spine---and ----well, just look at my signature line, as I'm sure some of you don't want me to repeat my drill AGAIN. :rolleyes:

I have chosen to wait for now, and avoid the surgery because I also have the cervical/cranial instability---and I think that would get worse if I had the laminectomy/fusion of my spine from c-3 to c7. The area above it would only become more unstable due to the areas below it being fused/stabilized. I have two surgeons with differing opinions. Unfortunately--I can literally feel the instability, and it's been proven through testing that it's there. I don't know how much longer I can wait---but I need to do something...

Chiari and chiari related conditions/congenital stenosis can be very devastating, and if one suspects they may have it---then by all means get it checked out----BUT by an expert in these areas.

I just read where a 45 year old woman died----she suffered for years with chiari, and the many complications that go with it. (death is a rare complication) Weather her death was related to her chiari was not made clear.

Surgery in this area is a big, big deal--and it's not a pleasent surgery----very painful. I would want to make sure it is something that is going to save my life---or stop me from being in a wheel chair.

There's all kinds of web sites that can help educate you----see the link below to the WACMA site---(world arnold chiari malformation association).

http://www.pressenter.com/~wacma/links.htm

When I had my surgery in 2002---diskectomy/fusion of C5, 6, and 7 I had improvement of a lot of my symptoms---pain and ANS symptoms. BUT, the pain and symptoms came back 6 months later, and have continued to progress for the worse. Dr. Heffez stated in the surgical notes that I had a v shaped dent in my spine from the long standing compression of the C5 disk. A large amount of steroids were used in my IV after surgery. I often think the steroids helped me feel stronger also. Still on the fence on that one.

Julie :0)

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Sophia, I think you're talking about Dr. Rosner--and I think the patient who was featured was Lori-- and she and I used to correspond via email. She went MIA a few years ago--I've not heard from her since. Also, I think I'm correct in saying (and DO correct me if I'm wrong), but I think this doctor's medical license was suspended for a time. I also think he has since been reinstated. Okay, I double checked and, yes, he was suspended in NC.

Here's info on the suspension and a rebuttal

http://www.nfra.net/Rosner%20Rebuttal.htm

Nina

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I am looking everywhere and cannot find the link to the Johns Hopkins stuff on CFS and cervical stenosis/chiari as sometimes being a cause of POTS/CFS...

Nina, I remember sending it to you to add to the links page and can't find it. Grrrrrrr....I hate that I keep losing it!

Anyways, my commentary is that a family history can be suggestive...and you could see if you have this by having an MRI.

Also, the Hopkins article explains other ways to treat it...

You need to EXHAUST ALL OTHER TREATMENT OPTIONS BEFORE GOING FOR SURGERY!!!! We originally thought that I had cervical stenosis as the casue of my POTS...but no longer think that.

If you do have cervical stenosis and movement restrictions as a result, you can do PT to try to resolve the symptoms...specifically using techniques such as neural tensions, cranio-sacral work or myofascial reslease. If you can clear up the neural tensions and open up pathways better, you can possibly avoid surgery even with cervical stenosis. That's a very short, layman's version...

If I find that darned JHU article I'll let you know! :rolleyes:

Emily

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Julia, I didn't really think my surgery was all that painful. The only part that REALLY hurt like (a bunch of bad words) was where they chiseled that bone graft out of my hip. There's no way to numb bone...

Granted, I didn't have any plates or rods, and they were able to do all of mine anterior (from the front)--dorsal entries can hurt a lot more because they cut the muscle, and may break off the bony prominences (ridges) on the back of the vertebra. Again, no way to numb bone. owie.

Nina

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Be careful about interpreting any claims about a surgeon's percentage of success with an unusual procedure. Sometimes the data are simply made up. If they are for real, then they should be published in a journal somewhere.

You have to jump through all sorts of hoops if you want to test a new drug. But the rules are much more lax for surgical procedures. Surgeons can do whatever they think is appropriate for a patient, and they can collect data on a series of patients, without reviewing a protocol with anyone ahead of time. If things don't go well, the surgeon can be sued for malpractice or lose his or her medical license. Also, who is scoring the results? The surgeon himself or herself? There is considerable chance for bias in assessment.

Even if the research was done properly, you have to review the inclusion criteria very carefully. The outcome of surgery for low back pain, for example, depends on how carefully the candidates were selected. If your doctor says you are a poor candidate, you may seek a second opinion. But don't keep "doctor-shopping" until you find someone foolhardy enough to do a procedure that is unlikely to be beneficial. You could easily be worse off than when you started. I guess that the same thing would apply to surgery on the cervical spine. So even if a study showed good results with a particular procedure, if you don't resemble the patients it worked in, you can't expect that the results of the study will be any guide to your likely experience.

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Hey~

I just had a subocciptal craniectomy with duraplasty and partial lamenectomy of C-1 to decompress a chiari malformation on June 7 by Dr. Heffez. I personally do not recommend that surgery to anyone unless you are out of options. Dr. Heffez recommened surgery to my mom and I based on the fact that I was on O2 24/7 (levels would just drop to the low 60s for no reason at all), had a constant pain in the back of my head (felt like an ice pick had been lodged in my skull), and could no longer sit up due to severe orthostatic intolerence, and my abnormal SSEP study. I think the fact that I'm only 17 probably played into his decision as well.

I had tried all of the "typical" POTS treatments to no avail. I continued to go downhill for five years until I got to the point mentioned above. Because of the surgery I ended up with bacterial meningitis and a severe staph infection. Less than a month after the initial surgery the local nuerosurgeon had to go in and scrape all of the infected and dead tissue out along with collect deeper cultures... This surgeon found pockets of puss all the way down to my dura patch.

Now with that said do I regret doing the decompression? Absolutely not! Before the surgery I only left the house to go to doctors appts with my wheelchair and "Darth Vadar" oxygen tank, and then when I got to my doc's office I had to lay down on the floor with my feet up on a chair. I went to the movies 2x last week WITHOUT my wheelchair, and I've actually walked through grocery store on several occasions. I've not needed to use my oxygen and I just did an overnight pulse ox study which showed that with the exception of 3 1/2 mins my saturations remained above 90% (and this is at 8000 ft!). Of course the real test will be how I hold up over the months, for now I can say that this surgery has been a success... I still have POTS but I'm hoping that once I'm able to get back in the pool for PT and build my leg muscles back up my blood poolage will get better. I guess I should probably say that I do have EDS (definately hypermobile... I can lick my elbow!).

Dr. Heffez feels that he will have to fix my neck from a horse accident five years ago, but he absolutely refuses to touch it until after I turn 21 (when we know for sure that I am done growing). I have several bulging disks and probable spinal cord compression (not true stenosis).

Sorry that got so long... If you feel that you have chiari or cervical stenosis then look into it. If you do have chiari I would look at the qaulity of your life before jumping into surgery... For one that surgery hurt like none other, and there's what happened to me post-op (staph is all thanks to my wound flopping back open after staple removal).

Alexa

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Here's the link I was looking for:

http://www.pediatricnetwork.org/medical/OI...ohnshopkins.htm \

Hope this helps.

Also, type in 'neural tensions' into a search and you will find good discussions. Also, type in cervical stenosis or chiari in a search. (not as a keyword within posts but in topic titiles). Lastly, there is a long discussion on the type of pt I was trying to describe (and that is discussed in the article I just linked above) in a post called "Has anyone been prescribed physical therapy" by Jersey Girl. So, you can read this post also if you type that into a search!

I thank Alexa for sharing her experience with Dr. Heffez. I realize that this treatment is controversial. But, Alexa is a good example of when I think surgery is all that is left in terms of options...and I do beleive these doctors have our best interests in mind.

I am currently being treated for chronic lyme disease. Both of my doctors took a huge leap of faith to do this...as it is also controversial and quite polarized in the medical profession. I, like Alexa, have continued to deteriorate over the past 8 years and am completely homebound/recliner/bedbound except to get up for little bits at a time. My quality of life is very low. I have also exhausted all 'conventional' treatments for POTS and also looked into Chiari and Cervical Stenosis. When my MRIs didn't come back clearly indicating stensosis (which we thought they would), we went the Lyme route and are thinking my neck pain is from that. But, only time will tell. We voted that a few months of antibiotics was less risky than neck surgery!

So, in the end, I understand the incredible controversy, but I also understand that some of us are beyond where medicine is right now. I am one of those people and my doctors have decided to take some leaps of faith with me b/c we are out of options.

Sorry if this is depressing! I honestly didn't mean it to be. I do truly believe in the cervical stenosis hypothesis. We were honestly surprised I didn't have it b/c my grandmother, and both of her children (my mom and uncle) have it severely. All, except my mom had/have had at least 2 surgeries.

Oops, this got long. I am soooo supposed to be resting!

Emily

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I personally picked Heffez because he was so cautious. I had spinal cord compression from bone matter that was invading my spinal canal as a result of an auto accident when I was 10--I'd gone undiagnosed with a ruptured disc that allowed the bones to heal in a poor position. We didn't realize I no longer had a disc at all until they opened me the first time...the bone that had filled in just looked like bulging disc material on all my MRI's and CATs, even the specialized ones I'd had done at Dr. H's site.

I went to be evaluated because I was having trouble with weakness and pain in both arms/hands, losing my standing position without warning, choking while talking, eating, drinking, just swallowing saliva, numbness/loss of sensation, especially temperature that resulted in scalding myself in the tub several times--it felt just warm to my hands, but was steaming hot, and I stepped right in with both feet.

Also, I'm pretty sure Dr. H thinks of me from time to time as one of his nightmares :D because in all his years of doing surgery, he's never had a bone graft that failed like mine did. I know now that it was probably an EDS thing, but I didn't have that diagnosis then. I'm sure that now he's even MORE cautious with patients who are anything like me ;)

nina

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Nina,

Don't you just love being a medical marvel?

In my last conversation with my POTS doc, I commented on how my veins were a nightmare, so I couldn't get in-home care, and needed to go to the hospital for treatments. He said, "Emily, that's not the only thing about your case that's a nightmare, there are so many things about your situation that are a nightmare!"

It was then that I realized, even the best doctors in the world, can be stumped by us. It makes me sad b/c he wants so much to help me. I feel like I break his heart by not getting better. His comment was said with such kindness and compassion.

He sent my MRIs to Heffez and I guess that Dr. H didn't see anything that warranted further investigation. However, if the Lyme treatment fails, I wonder if I should make the trek to see Dr. H? Hmmmm....I would hate to know that we missed something on the MRIs. I saw a local neurosurgeon who badmouthed Dr. Heffez so much I left so angry. His information was actually inaccurate and untrue, which made me even more mad. I am glad to hear that you believe that Heffez is conservative, that is what I have always heard.

This local neurosurgeon said he and other neurosurgeons wanted his license taken away, that he was just opening up anybody, and blah de blah. He said he felt morally obligated to prevent me from having surgery with Dr. Heffez. I was like, and you are who????? A big fish in a little pond in this little town we live in. Most infuriating was that he said, 'these people think they are pioneers, but they aren't. He might win the nobel prize in medicine some day, but I don't think so. He's not a pioneer, he needs his license taken away.' It's not that black and white to me. Especially when people like Heffez are TRYING to help the sickest of sickest, and this doctor threw me back out on the street with less than a 15 minute consult and no other 'possible solutions to why I might be so sick.' just the comment that 'most people who are 30 and have been sick as long as you have a diagnosis by now. You don't just have OI.' Well, duh. He told me not to mention Dr. H's name in public...Oh good grief!!!!!!!

Okay, that was a rant!

Goodnight!!!!!!!!!

Emily

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Emily~

I cannot believe that someone would bad mouth Dr. Heffez like that!! For me Dr. Heffez didn't just decide on surgery from the MRI (I didn't have the standard 5 mm herniation) plus he absolutely refuses to fuse my neck at this point (but after last month or rather these last 5 yrs I'm all surgeried out)... He waited until we did the SSEP/BAERs study to make any decisions. Now we're glad that he did the surgery as when he went in things were worse than they looked on the films... I had a major artery/vessel (mom can't remember what he told her) being choked off by C-1, so my blood pressure was dropping to unreadable levels when my brain was already deprived! No wonder I was fainting all the time!!!

I refer to the local neurosurgeon as "God" because he is soo arrogant! When we saw him for the first time while I was in the hospital the first thing out of his mouth was "Well why's you go all the way to Milwaukee for the decompression... You know that we do those here all the time!" I'm just sitting there thinking, "oh really, then how come you're not listed on the WACMA site?"

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Hey everyone - this discussion has been great - and thanks to insomnia, I have time to read some posts before I try to slug through my day at work :D ! I've spent the last two years trying to figure this out with Dr.s laughing at me and making all kinds of "somatic" diagnoses (it happens to guys too). I knew something was wrong with my dad and I knew I inherited the same progressive symptoms. In the last 24 hours I've finally started to see a general unifying explanation for these odd and disconnected symptoms.

I can really see how patients in our shoes can be confronted with difficult choices such as spinal or chiari surgery. I cant fault anyone given how frustrating and chronic this is. It just really chaps my hide to see the medical community tell people they've got a somatic disorder, just work on sleep hygiene and take anti-depressants and you'll get over it - while not researching more about the role of the spine.

Thank you all for your thoughts and experiences in this thread.

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Hey Dano~

I'd say go with your gut! You know what is going on in your body better than anyone else... If you feel that you have stenosis ask your doctor for an MRI. I actually diagnosised myself... I saw a tv show on the Discovery Health Channel ("Mystery Diagnosis") and my family and I just couldn't ignore the similarities. The girl featured on the tv show had the exact same symptom progression as me until she got so bad that she was in a wheelchair... Unfortunately she wasn't on O2 but I knew that was something that was controlled by the brainstem, with the compression gone so is the O2!

Symptom progression... abdominal pain & nausea/vomitting--->headaches--->dizziness--->fainting--->wheelchair--->oxygen level dips at night leading to O2 with sleep--->O2 24/7--->SEVERE orthostatic intolerence (couldn't even sit up or recline)

If you do have stenosis look for an experienced surgeon... Originally we were going to go to TCI but we found more patients whom perfered Dr. Heffez. Dr. H is great! When I became really sick after surgery and ended up in patient we called my mom personally almost everyday as soon as he found out. If you leave a message he usually calls back within an hour (unless he's in surgery). No one knows your body better than you... If your doctor refuses to listen to what you are saying then you need to find someone else! Good Luck! ;)

Alexa

ps... Michelle, Mighty Mouse, Sunfish... I really appreciate the fact that we are allowed to talk about all of this! Thank you for making this such an open, welcoming board! I really appreciate all of the hard work that you guys put into this board even though you are all dealing with your own health issues! :D

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Stella

You sound like one AMAZING young lady to go through what you have with the surgeries and meningitis! I am glad it has helped you get upright and move around more. I can understand where surgery certainly seemed like a reasonable and ONLY choice for you!!

I hope it continues to be and your recovery goes well. I can not imagine facing what you did, at your age, with such maturity and wisdom.

I know dr. H has an excellent reputation.

Good luck to you and let us know how you do down the road.

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Alexa!

I agree with Sophia...you are really one amazing cookie! :D So articulate and smart...and you are right about TRUSTING YOUR GUT!

I saw a wonderful geneticist at Hopkins a couple of years ago and he said to me: "Listen to your body. And, never take NO for an answer." I have held on to those words soooo tight as I've seen a bunch of yo-yos sicne then, including that neurosurgeon! I laughed, b/c they do think they are God when they are big shots in a little town! ;)

Part of me just wonders if I should pursue the cervical stuff more, but my POTS doc is one of the ones who first discovered the connection, so I feel like he would push it more if he felt it was a possibility. Dr. Heffez only saw my cervical spine MRIs and said he didn't see anything that warranted me having the level of symptoms I have. (My POTS doc forwarded the images to him and they discussed them). So, I felt that I should trust that.

I did see that Discovery Health show and my symptoms are much different, but similar in a lot of ways. My neck pain is awful--debilitating. But, I guess we all thought that SOMETHING would show up on the MRIs and they were clean as clean can be. Hmmmm......

Alexa...congrats on seeing two movies! :) That IS a big accomplishment! I'm too sick right now to even watch one in my house! :)

And, yes, this board is a wonderful, safe, generous community, kept that way by the generous hard-working souls of MM, M, and Sun!

Emily

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Guest Julia59

Stellakitty---I'm glad your surgery turned out well. Dr. Heffez did my diskectomy in 2002---thankfully he used a plate to secure things---because we later found out about my EDS.

I should say posterior surgery is painful-----my anterior cervical spine surgery was not that painful. In fact I never used anything for pain other then tylenol. I never touched the morphine button. I'm in much more pain now then I was directly after surgery. I was really stiff, and the stiches didn't hurt at all, and that's about it.

However, a laminectomy---or chiari surgery is quite painful becuase it's done posteriorly---and muscles are cut, and pieces of bone are taken off the vertebrae during a laminectomy for cervical stenosis.

I'm afraid I'm going to have to find a pain med I can tolerate. I'm not good with narcotic type pain meds---they make me sick---and also quite MEAN---- ;)

I'm not quite home bound like you Emily, but I'm close. Venturing out is really hard on me lately, and I'm becoming more physically limited, and my OI is getting worse. Gravity is not my friend. One time I got so disoriented when I went out -----I just couldn't believe how lost I got on the MUO campus looking for the outside tunnel after leaving the library. I could not remember there was a court yard between the tunnel and the library. By the time I figured it out I was near collapse. I just couldn't believe it---I've been to that library many times................ :D I guess I'm not so well off cognitively either.

Emily, Dr. Heffez also did a cat scan with contrast on my cervical spine in addition to the MRI's I had. The C-scan showed the congenital cervical spine stenosis more prominently. I have less then 10 mm throughout the entire c-spine---some areas only 8 mm----and in flexation/extension it's worse. The stenosis has me at the beginning stages of myelopathy.......... and the instability at the cervical cranial area can't help much---along with that odontoid bone rubbing on my brainstem---and the small posterior fossa---(aka--chiari-0)--however--I do have 1 mm herniation.

Julie :0)

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Hey!

With me the MRI wasn't definate... Both the neck issues (disk degeneration, no fluid between spinal cord and vertebrae) and the chiari appeared to be fairly mild. From looking at my MRI he couldn't definately say whether either issue was enough to cause me to be so disabled so he ordered a SSEP and BAERs study. When the SSEP came back abnormal (significant delays from my legs to my brain indicating that something was blocking the nerve's pathway... I didn't really feel the shocks in my leg much) he decided that doing the chiari surgery was worth the risk... He had told my mom several times that he couldn't just leave me like that, and during the consult he said that he'd do what he could to help me.

Emily- Maybe some more testing would be apropiate? On the MRI we sent up to Dr. H he felt that there could be something but it was hard to tell due to interferance (I had braces). He told my mom to take my braces off and bring me up there. Sometimes on MRIs it is hard to tell just how bad the problem is. I get neck and arm pain and Dr. Heffez had my pcp get me a soft cervical collar... It does help with the pain and I feel supported but then I end up looking like a car accident victim. On your MRI did you get contrast? Did they just do your c spine or did they also scan your head? Maybe you could try a collar and see if it helps any?

Keep looking until you find answers and don't give up! My mom and I had to listen to people tell us that I just had typical POTS and was just in a slump (yeah a slump that lasted years!). I know that it is hard for anyone to be stuck on a couch for two years, but it was really hard for me because I had to miss out on doing stupid teenager stuff. I know that we need to see how I hold up over the next couple of months, but for now I can't deny what this has given back to me... I'm now looking forward to being a senior in highschool and going off to college so I can obtain the necessary degrees to become a pyschologist.

Alexa

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I'm now looking forward to being a senior in highschool and going off to college so I can obtain the necessary degrees to become a pyschologist.

Alexa

Alexa - that's great, and I hope that your progress is steady in the right direction. I am quite impressed by your positive attitude under adversity that seems so unfair for someone your age. One thing positive about dealing with chronic illness, for me, is a depth of character and real empathy for human suffering. I'm sure you'll make a wonderful psychologist! Best wishes in your path :D

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Alexa,

Somehow this post just kept getting away from me...the topics move from the screen so quickly these days! :lol:

I wanted to come back to this post though and follow-up to your questions and also thank you.

I really appreciated what you said. I am planning to have a phone consult sometime soon with my POTS doc and will raise the concerns I have with him in our discussion--that I just want to be sure that we are not missing something.

I did have another Lyme consult recently and the Lyme doctor is feeling more and more like I do have Lyme.

My POTS doc originally thought I had cervical stenosis, as I have said already. We were torn when the MRIs did not come back wtih ANY evidence of myelopathy, stenosis, etc. So, then we looked into Lyme.

He has been honest with me about how murky this area of medicine is. For instance a neurosurgeon who believes in the cervical stenosis issue causing POTS might say, 'do surgery, it's a waste to treat for Lyme if it's cervical stenosis' and a Lyme doctor might say, 'let's at least try antibiotics for a few months to see if they help before we jump into surgery.' Not putting it as articulately as my doc does, but you get the drift.

My POTS doc did send my cervical MRI to Heffez and he didn't see anything he felt was worth pursuing. I later had thoracic and brain MRIs done also and had the cds of them sent to my POTS doc. He said that the cervical MRI had been so clear that Heffez could see if I had chiari or not also. So, I don't know if he passed the other MRIs on or not. Yes, they were done with contrast.

I wanted to thank you for encouraging me to ask again and just feel more confident in our decisions...

I also wanted to tell you how wonderful of a psychologist you will make! Dano said it so well!

To Dano--please let us know what you find out????? I will be curious to see if you have definitive stenosis that may be contributing to your problem. Another girl on this site, OCSunshine was able to deal with hers and have much improved quality of life using the PT that I mentioned in an earlier post...

Emily

p.s. We did discuss the cervical collar too...possible a hard one! yuck! a two week trial. But then, when my MRIs came back so clean and Dr. H felt they were so clean also, my POTS doc scrapped the idea. I have used a soft cervical collar with some success in the past. But, unfortunately, Lyme can cause crazy neck pain too, so it's hard to sort out. And, you are right, they are miserable to wear!

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let me just add a little note for dr. heffez. he came highly recommended by a peds cardio @ hopkins, dr. peter rowe. dr. rowe said dr. h was the best in the country @ reading head/neck films, bar none. i just sent him my wife's pics a few weeks ago and he wants to investigate a little further before making a jaunt to beer country from dear ol' virginny. the man obviously knows what he's doing.

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