I am a bit confused and frustrated. I had my decompression surgery about a year and a half ago. I continue to have problems with pressure headaches and severe nausea. I have seen two very well respected doctors in the Chiari field. The problem is they have different approaches as to what the problem actually is and how to correct it. My problem is do I now get yet a third opinion? The bills are really starting to add up and I'm just not sure who is the right choice. Is it really possible to believe that we can be symptom free or is that just not going to happen? I dont want to keep having surgery in hopes of fixing one problem and then creating a new problem. One surgeon believes the other removed to much bone and that he can reconstruct the area. He says my brain is now sagging and may be whats causing the problem but he cant be sure until he gets into my head. My pressure is elevated in my head but not terrible. Had an LP and had fluid drained and did not feel any different. Not sure what to think. I dont want another surgery but I dont want to feel this way either. Any thoughts? Third opinion? Neurologists have been useless. Just not sure what to do next.
I agree with others above. Sounds like you are not being diagnosed with all the related disorders of Chiari. May I ask who are your neurosurgeons? They should check for EDS, CCI, Basilar Impression also. The only way to “build up bone” is to fuse them. Is that what they are saying? A neck collar and traction therapy was prescribed for my daughter with EDS after brain decompression. She saw Dr. B at TCI. He had to remove a little more of c1 than anticipating due to herniated tonsils posterior and anterior. She has BI now.
Opening pressure was 23 and closing was 14 but there was no difference in how I felt so the doctors do not believe a shunt is the answer. I dont believe there are any clotting disorders but dont know for sure. The doc wants to put in a plate to help with the slumping and possibly remove scar tissue but until he gets in he wont know for sure what needs to be done. He feels like there is still some crowding. Not sure how he is going to fix that yet.
Beeba said:
Have you ever had them tell you what your opening pressure was on spinal tap? Do you have any clotting disorders? I see your one option was to build up bone what was the other option?
I had a LP and my out pressure was 23.5 cm (235 mm). The radiologist said it was not extremely high. They removed 10 cc of spinal fluid and I didn't feel any different. I am on Diamox now. This Sunday will be three weeks that I have been on it. One 500 mg pill a day and I have not had one headache since I started taking it.
What was your out pressure?
I completely Understand your frustration,
I don't understand How some Dr's are so good and knowledgeable and other's treat you like you're crazy?
I an 2 years out from decompression ! I received a letter this past fall saying I had a serious brain disease and hadn't followed post surgery protocol and since I wasn't taking it seriously they wouldn't see me? Wouldn't even give me a referral ( Post surgery Protocal was never set up) In four yrs I had to reschedule 4 apts.. ( we get terrible snow storms and the pass get's closed, along with 1 x I was to sick to drive myself there 4 hr drive in good weather 1 way, Each time I gave plenty of notice)
Even my pain management Dr called them and explained my circumstances.. Nothing. He is the only specialist in the surrounding 3 states. I am disabled and only have Medicare and the Medicaid doesn't work if you go out of state..
I am miserable again, I have 90% of the symptom's of EDS. I have dropped down to 100 lbs at 5'7. My heart is acting crazy, sweating buckets of water, the right side of my face and ear go numb and tingle and I get bumps on the right back of my head that hurt so bad it wakes me up. My memory is getting worse, I keep losing my voice hard to swallow and I keep having problems with my SI, Hips and C1-2-3going out. I also have really bad stomach problems. They did a regular MRI and it said my tonsils had lowered back down, in 2008 when they finally did the MRI on my brain and neck , it stated along with the Chiari's I had over 14.5 dozen white matter Lesion's on my brain and said it didn't look like MS. The new MRI said not only had the multiplied but grown in mass??
I have a huge family history of heart and vascular disease and read That Vascular EDS can cause the white matter lesions. My Dad past at 48 his brothers before 50, my Mom passed at 52 , my brother 32 and my cousin had a massive stroke at 32. They kept telling her she was too young not to worry..
I had an apt with the Cardioligist last week and he was concerned and scheduled an ECHO , set me up with a Monitir for 24 hrs. he said it was very important I make and appointment with a new Family Dr who came from the Mayo Clinic.
His Words, I already had the decompression it was fixed what did I want him to do? I tried to explain about EDS he said I had a 15 min apt and my time was up.. Gave my papers on how to deal with chronic pain and wrote a script for an antidepressant??
I can feel my health going hill down really bad again, I have no Idea where to go or whom to see since he was the only Chiari Surgeon .. I'm In CO and very curious what type of Dr is best for Diagnosing EDS?
If anyone can help guide me to the right Dr I would really appreciate it.
They tell us we know our bodies and advocate for ourselves , don't give up but when there are no Dr's what are you supposed to do?
Thanks for letting me share, just very frustrated and scared..
If there is ever discrepancy between specialists, you either need to think one if right and the other wrong, or you need a third opinion as a tie-breaker.
However, many of the patients I see who feel they are getting differing opinions are getting similar opinions with the neurosurgeons using different phrases.
So, I would recommend having the 2 neurosurgeons correspond. You can personally get their notes, review them with the MD who wrote the note, and ask them why they feel their route would be more likely to be successful than the other. If they can't explain their reasoning, you may have your answer. Or, you may simply be beyond the science of medicine and into the art of medicine. In which case the answer may simply be personal preference of the neurosurgeon.
But you need a course of action with which you are comfortable. If the two you have already seen can't get you that, a third opinion is the next option.
No, Beeba, I think it is generally human nature to be liked and confronting someone on their opinions is always an uncomfortable situation. Just like in real life, so MDs are more approachable than others. Really what I was trying to get at was to find peace with your pathway. Communication is the ideal, but I'm aware it is often difficult to accomplish.