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1457748 tn?1317575165

Second NS opinion on PFD surgery

Hi All!!
A year and a half ago I seen a NS who said he would do surgery if I wanted it but he didn't know if it would help. I didn't feel comfortable with his lack of confidence and needless to say he was by no means a Chiari specialist. I decided to wait and see if I could find other ways to alleviate my symptoms. Nothing has worked as a matter of fact I've got new symptoms. I have a constant burn down the left side of my body mostly In my leg. It's terrible. It started last July. Initially I thought it was a side effect from Topamax because it started shortly after I started taking it. I had many side effects on Topamax and had to stop taking it. All of the side effects went away but the burning persisted. My NL believed it was all Chiari related and I should go have the surgery. The only problems that have ever showed on my MRI and CINE MRI have been low lying cerebellar tonsils at 8 mm, no flow in the 4th ventricle but otherwise there was consistent flow, I have a C6-7 fusion and now have a bulging disk at C5-6 but not to the point if requiring repair.
I decided to seek out a second opinion from a NS. I met with her yesterday. After hearing my symptoms and checking me out she then reviewed my latest MRI (brain and C-spine)
which was done in MAY she said she was expecting to find a syrinx because of the burning and numbness, but didn't so based on her findings if I were her family member she would advise me not to have the surgery. She said if she did do the surgery she would not open the dura just remove the skull base. She said she fully believed I'd still experience the same symptoms and it would have been done all for nothing. She's sending me for a EMG and nerve conductive test and acupuncture in the mean time. I'm so tired of feeling like I do and wish it would either get worse so it can be fixed or go away so I can live a normal life! I'd rather the latter! Just wondering if anyone else is in my position and if so have you found a way to make life easier? Please share your thoughts I'm at my wits end with all of this. TY

PS...I live in FL and have terrible INS so seeking an opinion from a Chiari specialist is not an option for me. Although we do a specialist in Miami they will not take my Ins. At this time this is the only Neurosurgeon's I can seek treatment from.
3 Responses
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1663373 tn?1333635989
I have had pdf which helped with alot of symptoms had fusion which helped with more symptoms but still had neuropathy like pain and headache the one thing that had given me a ton of energy and decreased my pain is acupuncture.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi...it is nice to hear from u again, sorry that things r not better yet....or that the meds did not help....nothing med wise worked b4 I had surgery, but TOPAMAX is helping me post op, and I agree the first few weeks r full of weird side effects, but ur body does adjust and they go away....not sure how long u were on it....

  Also, I wanted to mention since u have so many disk issues to  make sure u r tested for Ehlers-Danlos as it is a connective tissue disorder and will affect joints....I have EDS and disk issues too...

Not sure what type ins u have, but as Dana mentioned TCI does work with ins now and something to at least check out....getting there, well we do have a few non profits listed that offer to fly people to Dr appointments and for surgery....plus many places like TCI have a place for u and family to stay while u r there at really reasonable rates.....
Helpful - 0
1823499 tn?1370090289
I hear that tci in new york now works with people and their ins. I did not go there myself but some on here have. I'm sure they will post to you shortly. I know this journey is not easy. I myself have had 2 surgeries amd still have more bad days than good. Hang in there, Dana
Helpful - 0
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