9 years post op symptoms returning

Question

Hey y'all I was diagnosed in 2004 and immediately had a partial fusha decompression done. The diagnoses come after 3 seizures and 2 mini stroke like episodes. My son was also diagnosed in 1996 and also had the surgery (he is doing great). Starting last month my headaches at the base of the neck into the right eye has returned last night while sleeping I had 2 gmal seizures. My energy levels are gone. My ACM specialist has retired. Unsure where to go from here is this normal?

Btolliver · Answer

Also have been having episodes of being off balance alot and my bp has been elevated 150-160 over 102-110. I'm only 35 years old but my body feels 100. I have had my appendix removed complete hysterectomy 9 knee surgeries shoulder surgery my disk c5/6 blew in my neck my lower lumber now is DDD and I have been diagnosed with RA.

Btolliver · Answer

After reading the other post I am having more symptoms then I realized :( over the last 3 months I have went down 36lbs and lost 5 pant sizes. For no reason. And no I didn't need to lose the weight I'm 35 with 3 children and I wear a 3/4 in jrs clothing now :(

selmaS · Answer

Hi and welcome to the Chiari forum,

 Sometimes with the partial decompression not enuff room is made..do u know if it was called a bony decompression....I know others that had the bony decompression did need a 2nd surgery as the first did not  allow enuff room for the CSF to flow correctly.

 U said ur Dr  retired, and I would suggest u find a new NL to do testing to see if u have a CSF obstruction.....that could be the reason u r feeling how u do....

 When was ur last MRI?

We do have a list of Chiari specialists, to be used to research Drs , it is not meant as a referral nor an endorsement....http://www.medhelp.org/health_pages/list?cid=186

Btolliver · Answer

The only think I was told was partial decompression and they used a cadaver bone

selmaS · Answer

Cadaver bone?are u sure it is not cadaver patch?

 Partial......usually does not include opening the dura so I am thinking they possibly did a fusion as well as decompression?

Btolliver · Answer

I'm really not sure I was so confused about everything I do have an appt with dr Malik out of Columbus ohio on aug 17 to see what is going on I've had 2 more seizures in the last 24 hours and a migraine that wil not stop. Tunnel vision and slurred speech at times it's like it was before I was ever diagnosed all over again.

selmaS · Answer

Good luck on the 17th and u may want to see if u can get on a cancellation list ....let his office know about the seizures and the increase of them....u may be able to not only get in sooner but get to feeling better soon too.

Btolliver · Answer

Yet again another seizure last night starting and following with a massive migraine ugh but dr Malik's office is gonna see me Monday instead of waiting til the 17th

desertstorm2009 · Answer

In addition to Selma's good thoughts, you can get a copy of your operative report from the hospital, along with the physicians progress notes. The operative report will tell you in detail what was done. The progress notes tell you the Drs game plan basically. Also, considering your symptoms (seizures/headache) it may be a good idea to check your b/p on both sides and document it. I would do so in the morning, afternoon and night and give it to your Dr. If it is high or your symptoms worsen you should think about being evaluated in the ER as there is always a chance this may not be Chiari related. Hope you better soon :-) Lisa