I need your advice again. I was dx with cervical spondylosis with effacement of cord @ c4-5, c5-6. I have had 2 ns agree on this. I was also dx with a 4mm tonsillar etopica. I failed tilt table test and dx with POTS. Chiari specialist wants to set up fossia decompression surgery. He seemed to be more knowledgeable than all drs I have seen.
I have lp shunt which has not helped sxs-actually made worse when pressure was adjusted lower. I never had opening pressure higher than 20. Two different ns, nl sayI dont need shunt. Another ns wants to put Vp shunt in and take out lp shunt. When asked to show me what makes my pressure high he danced around the question. Needless to say I will not be going back to him. This is the reason I question everything-I need proof and explanations why It will work. I wish I would have asked more questions before lp shunt was put in, got more than one opinion.
I am going to try ,with help from my gp,to rule out any other cause of POTS, But I have seen that cervical stenosis may be a cause. I want to do surgery only as a last resort . Sorry for rambling . The main question I have is when there is a cervical spine issue, which surgery should be done first-cervical spine which has a shorter recovery time or decompression surgery? Thank you for taking your time to help with this!
No, the suggestion is to do decompression first, worry about cervical spine later. My thoughts are doing the one with quickest recovery-c-spine first. From what I read, decompression takes quite a while for recovery.
I had my CM surgeries at the same time as my C Spine rebuilt. It takes a very long time to get over both at the same time if ever. I have bad post op symptoms. How much of your CSF is blocked? That is the most important question and are you in jeopardy of paralysis from the C Spine Stenosis or blocked CSF?
I also have chronic IH & POTS and excellent Dr's. I had POTS symptoms that started post surgical and broke many bones & had 4 closed concussions thinking I was just falling because I couldn't look down when I walk. The truth was the whole POTS process. Since Dec 2012 when I was diagnosed with POTS and started treatment I have only fallen bad enough to warrant ER treatment & hospitalization once and a few episodes. I feel so much better since being diagnosed and treated. I have even lost a large amount of weight. I have read where upper cervical stenosis can cause POTS or Dysautonomia, but it is also a well know related disorder for Chiarians that don't have stenosis. (Like you and I)
There is a lot of what came first the chicken or the egg situations with CM and related disorders. I hope in the future researchers can develop hard evidence to answer our questions and actually help us medically and to educate those newly diagnosed. It is very confusing & also scary.
We have some great Members that are more educated than I am on POTS (Abby & Peebles come to mind first. I am sorry for leaving others out my CM brain went blank for names). I do have a great Cardiac Electropsysiologist that has been tremendous. I have a normal very low BP & HR. My medication is different than most with POTS. Please see a specialist with CM & Cervical Stenosis it complicates everything. Have you been checked for EDS? You might want to ask your NS and be tested. That also seems a common factor.
As far as the shunt. I am fighting that battle also.I don't trust any Dr. that dances around important questions. Can you get another opinion? Then get a general consensus? If you would like we can help you find another specialist in your area. You can never have too much knowledge or be too prepared.
Which surgery should you have first? Wow.....no one can answer that question both have side effects, post op symptoms and possible set backs.
It really depends on the two questions I asked above. Then you won't have a choice. I will tell you it is important if the decision is up to you that you make it before things get worse and you have to have an emergency - 16 hr. surgeries - with a year basic recovery like I did. I don't want anyone to go through that or my pain & other issues now.
You are a smart woman. I wish you good luck in your research and decision & if you need additional opinion please let me know. I more than understand and am sorry you are facing this combination of situations. I had a very rude specialist consult recently. He told me in insultingly barbaric verbiage this was the worse combination possible of rare conditions to treat and live with. Yes....I left in tears. He was the third Specialist in well over 100 Specialist I wanted to slap. i don't feel bad though because we have a Member that is a Jesuit Priest that said the closest he ever came to striking a human being was an idiot NS.
Please let us know if we can help in any way & I hope you never get a medical provider that drives you to that point. We just get overwhelmed and have to research and make decisions without expert guidance at times and DO NOT need ridiculous medical providers making it more difficult. Just tell us " I don't know or I will find someone that does." It would make life easier and a lot less heartache for everyone with a Rare Disorder.
I actually am going through something very similar... I have Chiari and spinal cord compression, spondleosis, stenosis, ect. My nuero is Dr. Oro. He said it is a must to fix the c-spine first. Who knows how much of your symptoms can resolve after the c-spine is fixed. It is possible I may not need decompression once the spine issues are addressed. I am 5mm and have many many symptoms.
As far as the shunt goes, if your pressure is too low it can make the Chiari worse! That pressure actually helps hold the brain where it belongs.
Oro has been fantastic so far. My spine surgery is on the 31st of this month.
I would definitely get a second opinion from another Chiari specialist. There are so many variables the more doctors you see, the better you will be able to decide what is right for you. GO WITH your gut! My instincts were right. No one knows your body better than you.