Second opinion and trying to sort it all out

[Rhinda]

Diagnosed with Chiari 1 Malformation.  Got a second opinion from Dr. Bolognese who thinks I still have other things going on, so I'm back to being a mystery.  He wants me to see a geneticist to more definitively rule out RA, etc.  I have signs of these things, but they aren't obvious.  He recommended flexed MRIs of my lumbar spine.  The thin syrinx others were saying wasn't a problem he feels is a bigger issue because of accompanying disc bulge and scoliosis.  He wants to do an ICP Bolt to look for pseudotumor cerebri and intracranial hypotension or an unusual mixture of both.  Has anyone had this done who might be able to explain it to me?  Evidently the lumbar puncture that gave me a leak and long 3 week recovery gives some evidence of connective tissue issues and is more accurate for pressure issues in the spine, but isn't sufficient to rule out pressure issues in the brain (or at least in my case).  Then he prescribed a neck brace and traction unit to use at home each day for a period of time to see how my symptoms improve.  He also scheduled me for invasive cervical traction when the other tests are being done as I the flexed MRIs I had done were not sufficient to diagnose what may be craniocervical instability.  He said the milder, uneven, herniation I have is more likely with these things and feels it is not an issue of my posterior fossa being small.  This is VERY different from what the previous neurosurgeon told me (9mm and small posterior fossa and wants to do surgery), so I am now trying to sort through what to do.  Any words of encouragement?   I can't help but feel de-diagnosed (at least temporarily), but I see the wisdom in being more sure before jumping into the Chiari decompression.

[selmaS]

  I am so glad it all went so well for you !!!

Glad you were able to stay at Variety house as well...my hubby and daughter stayed there...I was not able to see it but they were happy for the close lodgings.....

I was also told about TC release and I am going on 6 yrs post op and yet to go back for it....I really feel I am stronger after having the surgery....that does not mean I do not have symptoms from the TC, I do...but I can handle it for now.....


Again, I am so very happy for you <3

[Rhinda]

By the way, I did have the craniocervical fusion and Chiari decompression together.  The occult tethered cord is something he wants to look into after I am well - not urgent yet.

[Rhinda]

Hadn't had a chance to thank you for this advice!  I am rounding a corner and am up more and more.  I am truly not the same person! :D. I think THAT in itself will take some time getting used to - being well.  Dr. B says I have hypermobility showing in my neck and possibly progressing.  I took pictures of my daughter being goofy while showing her flexibility - something she is no longer allowed to do.  He smiled and said she was a 9 on the 9 point scale.  I loved everything about Dr. Bolognese and my stay at North Shore.  We did use the Variety House.  We met 5 other families there with five ladies who were being repaired from past surgeries at other places.  It was amazing how close we became!  By the way, he said my form of instability was more rare (top to bottom), and could not be seen via MRI.  His new equipment and technique were exactly what I needed! :)  He really didn't think he would find it, but piecing together my file of history, he felt there was enough there that
it would be worth a try!  I guess he needed a 1 point difference to confirm surgery, and I was at 6 points of change.  The whole team was cheering and high-fiving at the drastic change for the better in my countenance, symptoms, vitals, etc.  He said the occipitoatlantoaxial hypermobility syndrome was VERY bad, and that he was really glad I had chosen to make the trip.  By the way, his new four video segments on youtube are very current and well done! Thank you again for all of your encouragement!

[selmaS]

  I am so glad you got answers and are going to get treatment and so quickly...I know it may seem too fast....but when it pain minutes can feel like days.....

Did Dr B also say if you have EDS? Most with CCI have EDS.....

The best thing you can do is find people to help with meals one you get home...as you will not be up to it.....if you have a recliner you may want to sleep there at first when you get home....help all around is what you are going to need and not be left alone....

The Hospital that Dr B works out of has a home across the street family and you can stay in at reasonable rates...it is called Variety House (former Ronald McDonald House...and is something to ask about for their lodging.

Get some comfy PJ's that are V neck tops so it is easy to get on and off...and you also may want them to be button front too....

I did not opt to have the phone hook up as it is an added expense as is the TV and the room mate I had , was using the TV on her side so both on would have been too much ,I took along a CD player and some audio books and music ...I took ear buds..this worked great for me to help de-stress....

Have your hubby bring cash along....I did not care for the hospital food and they do have a deli/cafeteria and the sandwiches were good....

Be prepared to do all the PT they give you while in the hospital and continue to do it when at home...and rest, rest, and rest some more...listen  to your body to when you will be ready to do anything post op.

Post your surgery date in the list your surgery date thread 2015..so a prayer thread is posted for you. wishing  you all the best.

[Nellan12]

I am so happy you have figured out the root of all your issues,just like you I had the traction test last March,and my results were also incredible,I couldn't believe the reliefe..it took me 9 months to get my surgery approved by the insurance,but I did have it on Dec 17,and I have to say that I have been with no pain meds for over 4 weeks and I have not had 1 headache since!!!! I live all my life with major headaches,this is an incredible feeling..you need to know it is a little difficult in the beginning, I thought the first 10 days were the worst, not to discourage you at all,because after that it does get better,and you can see improvevent every week!! I had my husband and daughters stay with me at the hospital,wich helped,and especially when you go home just make sure that there is someone for the first few weeks to make sure all your meds are given to you around the clock,,just follow Dr B advice,listen to what he says and all will be ok,just think that 3 months down the road you will be doing great just like I am!! Keep posting,let us know how you are doing,and if I can help in any way don't hesitate to ask me,you can even PM me if you like.

[Rhinda]

I was diagnosed by Dr. Bolognese with craniocervical instability yesterday by invasive cervical traction w/ imaging.  The test was very conclusive!   The traction felt so amazing that I asked to go home with it.  I also had the ICP bolt which was negative.  I'm staying here for fusion surgery this next week.  I  wasn't prepared for this, but I'm grateful to know the root cause of my symptoms!  Any ideas for preparing for the hospital stay very quickly?  Thank you!

[Elisaandbucky]

Dr. B performed my posterior fossa decompression in July, and I have all confidence in his surgical expertise. My recovery has been progressive, with elimination of many of my presurgical symptoms. Nausea and vomiting were pretty debilitating symptoms for me on a nearly daily basis. Since my surgery, I have had 1 single incidence of nausea and vomiting. I have since been to see the doctor again for my 6-month post-op. I would not even consider another surgeon. I am that confident in his thorough care. I hope this helps you with making a decision on how to move forward.

[selmaS]

  Most of what he is suggesting I have heard from others that went to other top Chiari Drs and these were some of the testing and experimental things done...ie- neck brace....some were upset as they wanted surgery right away, but doing these tests and supports help the Dr see just what affects you and your symptoms and helps them decide the best way to proceed....JMHO

[Rhinda]

Thanks, Selma!  It's really helpful to hear this! The other doctor is recognized in the field, so that is what makes it hard.  But I feel that Dr. Bolognese is being more thorough - I just thought  I had already experienced thorough! :D

[selmaS]

  Hi the testing Dr B is suggesting is typical for those with issues like yours.....if he did not want to do those tests I would have been suspicious .
  I had xrays of flexion and extension for CCI...and mine was there but not as bad.....

I also know how stenosis and bulging disks can also play a role in our symptoms and that will help decide which course of action should be followed..

Not knowing who you saw first and if that Dr was also a Chiari specialist....I would lean toward Dr B....just from all I have heard from others regarding testing etc....and I also know he has a long history of treating Chiari and Chiari related conditions....he is one of the country's top NS's for Chiari....

If it were me, I would have the other testing....if anything, it will help you decide which Dr was right.....