My trip to Cleveland Clinic today

[Guest Julia59]

WEll---how do I begin? I liked the neurosurgeon---he seems like he know his business---no doubt to that. But I still think the other two --Dr. Heffez and Dr. Bolognese know thiers...

I am confused as this latest appointment was somewhat of a mixed bag. He was not dismissive. He thought my cervical spine stenosis did not warrent surgery, and he thought I did not have significant cervical/cranial instability.

My neurological testing was positive in some area's and negative in others. I felt that they were testing me to see if I was faking---I'll find out when I get MY COPY of the report. He felt a lot of my symptoms were more related to CFS---and fibromyalgia----once again an easy lable to put on the whole mess.

I told him that I was happy that he thought I didn't need surgery, but I also said I am very concerned about the instability because I can literally feel it, and my neck slips a lot lately---SIDEWAYS TOO--EWE. He told me it might feel that it is slipping---when in reality it might not be. In other words---maybe I imagine it----HMMMM- I don't think this could be imagined---and if it is, I have quite an imagination---and could quite possibly be a little disturbed. Maybe he wasn't implying that at all-----it just sounds a little off.

I also told him about the swishing sounds I hear, and my sore ears---and the fullness I feel in them all the time. Of course the weakness in the arms and legs-----and how my walking has been affected, like i'm walking in mud----I don't think this could be realted to CFS---or the POTS. I know with POTS we can get weak----this is a little different then the weakness I experienced from my POTS.

He wants to order a bone scan to make sure my fusions have healed correctly, and he is also ording another MRI on my thoracic spine because of the hyper reflexes in my legs. He thinks the EDS may cause some possible instability there---Hmmmmm. Also, he ordered a flexation/extension X-Ray to double check for instability. Then he wants me to see a CFS specialist at The Cleveland Clinic because he is thinking my neurological problems may be more related to something systematic.

I'm on the same page as he is regarding the surgery. I think it should be a last resort until all other measures are exausted. However, Dr. Heffez believes I have myelopathy developing due to the stenosis---and believes surgery is warrented sooner then later. I guess i'll take a chance for now and wait things out for a while and see what happens.

I'll see what his notes say------------then I will take it from there.

I'm frustrated----and depressed. I could not sleep at all last night---my neck was killing me. It was so bad I thought I would be rolled in for surgery today----I could not hold my head up. It is feeling a little better now------but in no way do I feel at ease about the whole thing. Last night I started to feel panicked----my heart was racing, and the BBs were not working...finally it passed---but no sleep----

My SSDI will probably be screwed up as it seems I have doctors who have different opinions on my neck/cranial issues. not being able to hold my head up very long is one clue that this in not going away any time soon.

It would be nice if this was fibromyalgia---then if they fixed that--no more neck/cranial issues. But my gut tells me I have the on going problems----because I can feel it every day----it feels very unstable. Just typing this makes my neck slip....

God you guys have to be sick of hearing me whine about this.... I sound like I can't make up my mind on what's wrong.

Frankly---I just want to go to bed and stay there-----it's just too much for me mentally..................................

Julie

[corina]

Hi Julie,

I'm so sorry for everyhting going on with you. I don't have any answers (I wish I had). I just wanted you to know that I'm thinking of you and that I will be sending you some of my sleep, as I have far too much of it!

Corina

[morgan617]

Not sure what to say Julia. I can't turn my head to the right and it grinds and gets "stuck" and I have always blamed it on arthritis and fibro. I do have degeneration, lots of spurs and foraminal impingement, so I know that neck pain can be pretty unbearable at times. Mine is just blown off, so I guess I just leave it there. No one has ever checked for instability, chairi, or compression.

I can't help you much, but am sorry this is so frustrating for you. I hope the upcoming tests show something they can deal with, since there ain't no magic pill for fibro either....sorryyourebummedmorgan

[Sophia3]

Julie

I am sorry you are in such an emotional state. I have lots of neck pain or middle upper back pain as well and sometimes the crepitus noises.

I have no words to comfort you EXCEPT to say I would be conservative about another surgery BUT make sure you can get SOME relief of the pain.

Tie another knot in the rope and hang in there. Hope you get some answers after all the testing so that is hopeful....easy for me to say.

[melly4]

Julie, I'm sorry you're hurting. I'm glad you're not facing surgery at this point, though. I hope you get some better answers soon.

Melly

[Guest Julia59]

Thanks for the support---------

Yes, surgery is not for me right now----I'm relieved. I have two surgeons saying I should have surgery, and two saying it's not needed at this time. However, the one from the Cleveland Clinic would like to check out the cervical/cranial area just to be safe.

The bone scan doesn't sound too fun----but the upside of that is I will finally know if I ever truly had lead poisoning------(from what I understand it ends up in your bones.) I had a high lead count in my urine in March 2001.

I don't think I can get the MRI he wanted on my thoracic spine due to the implantable loop recorder----i'll have to check it out.

He did not question the EDS at all which surprised me. He sounds like he is knowledgable about dysautonomia, CFS and EDS----at least enough to refer patients out.

I'll keep you posted on what I find out. For the most part I have to say i'm relieved that it's not a terrible situation. It sure feels that way, but maybe it's a combination of pain from different sources. I'll just have to roll with the folks at the Cleveland Clinic and see what they can do to help me.

As far as the emotions go---i'll be seeing my therapist Beth soon---early November. She has been following my journey with me, and she helps me sort some of this mess out. I still have problems with high anxiety about the medical testing--ect.----but that comes and goes---still hanging in there---but rough going sometimes. Depression is quite heavy at times--and it's getting harder and harder to get out of bed in the morning. Once i'm up---I go through the motions of living-----It's not all bad.

Thanks for caring---------

Julie :0)

[Aprilmarie52]

glad you dont have to have surgery! Hope you feel better soon.

[momofpreciousboy]

I have read some of your posts, and find it interesting because we do have some similarities. Especially with fullness of ears, unable to hold neck up-it prefers to go to the side. either side. I spent forever trying to figure out the neck pain-physical therapy, manipulation, chiro, meds. Nothing helped. Finally, I found that the beta blocker made the pain go away. From what I understand is that the adrenaline from the racing heart causes the blood vessels to constrict, which in turn does something with oxygen involving muscles and causes them to tense up. I think my neck weakness is due to the muscle fatigue from this stress. It does not bother me everyday, but most at some point and affects my neck and area where muscles go into skull, and will go into my shoulders, chest, underarm area. It is called the coat hanger effect. It is the one POT symptom that really limits me when it is bad. While I do not see this problem mentioned very often at all, the POT specialist was quite familiar with it. I will discuss it here when I go back, as I have many questions about it. I was on Toporal and it did nothing for this pain. But propanolol did away with it or does to a certain point. I am hoping he can tell me why. Just thought I would let you know that POTS alone-as far as I know causes me severe neck pain.

I hope you are better today, and try to take some comfort in what the drs told you. I know how hopeless we can feel and I understand that, tomorrow is a new day. If I am having a bad day, I try to remember that- as each day I feel different. Jennifer TX

[Guest Julia59]

Thanks Jennifer & AprilMarie,

Jennifer-I do take beta blockers already and they do slow my heart down. Lately I have had tachycarida on them though, but when I didn't have the tachycardadi, I sitll had the pain.

I know what you mean though---I also have muscle spasms---and they are really painful too.

Believe me, I have no choice but to continue to advocate for myslef as this isn't going away. I woke up this morning with a terribe headache---worse then my usual. It very hard to type this now. It at the back of my head and in my ears. My balance is worse, and weakness is more severe today. My legs are more numb. In no way is this my normal.........this is way off for me. I was barely able to walk my Dog a half a block---5 houses down! They treated my yard---so I had to venture out of the yard to take her potty today----with bag and scooper in hand of course--

I really need to go lay down---my head has never hurt this bad

I just wanted to send thank again...... You guys are great.....

Julie :0)

[Sunfish]

julie-

sounds like your trip was a bit of a mixed bag. some good & some confusion/frustration?

did you have the PT appt too? i was super curious about that! (and the autonomic neuropathy doc i saw at CC yesterday wasn't familiar with it)

i know it's easier said than done, but keep on keepin on...

melissa

[Guest Julia59]

Melissa,

We had changed the PT appointment from 4:00pm to 9:00am because Amy Cassady the PT found an open slot. This was nice because we would have had to wait several hours as my appointment with the NSG was 7:00am and the hotel kicks you out at noon.

Anyway, it didn't work out as the NSG appointment went past 9:00am---so I had the secretary call and cancel. I'll have to wait until I go to the CC again. I am supposed to be scheduled to see a CFS/fibromyalgia specialist also---and I will go back for another appointment with the NSG.

I like Dr. Heffez and trust him for any future surgery, but I would rather put any surgery off if I can as a laminectomy is rough, and the way I feel right now, i'm not sure I could handle it. I have respect for all the surgeons I have seen so far, even the one in Michigan---although he was quite dismissive. I just want to find one closer to home because traveling is so hard on me. I wish Dr. Heffez was closer.

Dr. Heffez seems to really be on top of things---he is somewhere between Dr. Bolognese at The Chiari Institute and Dr. Benzel at the CC-----meaning he is more conservative then Dr. Bolognese, but more open minded then Dr. Benzel---if that makes any sense to you at all. He can't figure out why a lot of these docs don't pay attention to how bad my congenital cervical spine stenosis is. If you combine it with the EDS---well it's just not good. It actually shows more on the CT scan with contrast-------I have less then 10mm of the space needed on most of my spine-plus some herniated disks on C3-4 and C7-T1---and disk bulges on C1-2 and C2-3.

It is such a fine line that I walk right now, because if I really do need surgery I'm risking permanant damage. So you can imagine my nerves are a bit rattled right now.

I'll keep you posted on the PT. The PT is located on the 2nd floor in the Spine center---(Walker Bldg.) at the Cleveland Clinic.

Thanks' for the support-----------

Julie :0)

[Evie]

Hi Julie,

You mentioned that you wish it was fibromyalgia as it can be fixed, i was just wondering what treatments there are for it? (i suffer from it and as far as i know there are none... maybe i am out of the loop)

I use to be diagnosed with CFS and i think i understand what you mean by it feeling like you are walking through mud. Each step i use to take i would have to concentrate really hard on as it was such hard work to put one leg in front of the other and to keep going. Of course these things are hard to explain with words and you may be experiencing a completely different feeling, however he may be right that its connected to CFS.

Best of luck with the further tests. I hope they find a treatment plan to help you deal with your neck pain! (amoung other things)

[Guest Julia59]

Evie,

I said if it could be fixed it would be great............

I don't know very much about fibromyalgia, as I have been more focused on the neck issues, because I don't always have pain all over my body. The majority of my pain is the back of my head, neck, shoulders/clavical and upper back. I don't think I fit the fibromyalgia profile, but this doc thinks I have that and CFS along with my POTS. He did not completely dismiss the spinal issues which is good, and he is doing more testing.

He is very conservitive I think, more so then the other two surgeons I have been in contact with----but he runs pretty close to Dr. Heffez, as he is fairly conservitive also. I have been seeing Dr. Heffez for several years, and he has always suggested more conservitive measures until this last visit in July. The neurological examination was not normal----then he said I need a full cervical laminectomy.

The Doc from CC agreed that I have myelopathy, but he thought it wasn't caused from the spinal issues completely---he was thinking that something systematic could be involved also. I think Dr. Heffez is right about the myelopathy being caused from my cervical spine----but maybe something else IS involved. I don't know what else could cause it. He said MS is ruled out. Dr. Heffez said i'm worse off then I was before my surgery in 2002.

It was an interesting visit this week at the CC---and I was open minded---but it is taking a while for all of this to register. I'll know more when I get my records from the Cleveland Clinic---and also find out when i'll go for the next appointment.

Talk to you all later.............

Julie :0)