Surgery or Not?

Symptoms and Treatments Surgery and Recovery
1

I was diagnosed at 52 with a chiari in 2013 @ 7mm also with 2 herniated disc in spinal cord T1 and T3 and a neck spur, I have terrible headaches almost daily along with dizziness,balance problems, disturbance of skin sensation, seizures, fibromyalgia and Von Willie Brand's disease (hemophiliac)

With me this all started when my husband could not wake me from a nap, although I could hear everything going on around me, I could not move and he could not wake me for about 1/2 hour. He thought I was just in a deep sleep, even though I heard my family all talking around me and heard them coming in and out of the room and standing over me and trying to wake me, I couldn't move or wake up it scared me to death. My granddaughter was jumping on the bed saying grandma wake up I want to play and I could not move, my husband told her, honey let grandma sleep alittle longer she is sleepy, but he later told me he just wanted her out of there cuz he knew something was wrong. When he finally did get me to move alittle and I woke up, I was very drunk feeling, dizzy, couldn't walk straight, talked like I was drunk, at first we thought I had a stroke, immediately did all the test for a stroke our selfs (have many family members in the medical field) they were here in minutes even before I woke up. So we knew it was not a stroke, so off to hospital I went.....the neurosurgeon is one of the best at Duke Hospital here in North Carolina, Dr Bronic, did my MRI with csf flow found my chiari and herniated discs and neck spurs, but claims I don't need surgery, and says that I probably never will...even with all the other problems I have. So, I have only seen him a few times in the beginning then he referred me to a regular neurologist who follows up with meds... Topromax for my headaches and trigger injections for my pain in my neck and shoulders and he does my follow up mri's ever year to watch for progression of chiari. I just sometimes wonder if they are afraid of doing surgery because I'm hemophiliac, even though I can get an infusion for that, they say I would need months of infusion many times a day to keep me clotted for brain surgery (very costly) so they just treat my symptoms (which we all know is impossible) so I wonder do any of you have a chiari that you have that has never had surgery for and you just have lived with it forever, is that possible or does everyone always need surgery always. Is it possible to live with this without surgery even as torturous as it is and just try to treat symptoms as best as we can. Sometimes I feel so alone, like no one understands, I don't like the topromax no more I believe it is giving me eye pain, I want to go off of it does anyone know of anything else to take in place of that for headaches, even though nothing helps....Please let me know if anyone has not had surgery and just went on without it...if it's possible, just because I'm a bleeder, is anyone else a bleeder....it sure is scary.

Barb

2

Fewer than 10% - 20% of Chiari Patients EVER require surgery. Of the few that do, only about 60% receive long term relief. As most Chiari Surgery is done on pediatric patients that are symptomatic and facing further growth issues, you are probably not missing much. VERY VERY few chiari patients have or require surgery.

As you know VWD is really not hemophilia. It is a protein deficiency that can be well managed surgically. Desmopressin is very effective and one can always use Cryoprecipitate that contains VIII and vWF in thee rare type 2 VWB. Chiare surgery involves very little bleeding in any event as all it basically bone removal. Opening the Dura which is not done much anymore does increase the risk.

All of that aside, the most likely reason they are not recommending surgery is because you have CSF flows within normal limits and simply would not benefit. Had they NOT done that testing, there would be more room for doubt. None the less seeking out a second opinion may be of some comfort.

3

Hi stingerbabe, I agree that sometimes a second opinion can really help. I also wanted to mention that Ben's Friends has other support sites, you can find a complete list on the home page. Here are the links for the VWD and Fibro groups in case you are interested. http://www.livingwithvwd.org/ http://www.livingwithfibro.org/. I am sending positive thoughts and gentle hugs your way.

4

Absolutely get a second opinion!

5

I was 8mm herniated when my doctor recommended surgery. They don't always recommend it but my doctor said if it affects your day to day life or quality of life then I should really consider it. I was scared at first and thought about it for 6 months while my headaches, dizziness and falling down got worse. Finally my family convinced me that it was the only option. I am so glad I did it. I won't lie to you, the recovery was grueling and took longer than expected. I had my surgery 2 years from July 17. I was healed and ready to go back to work by October. My neck still has pain sometimes but nothing like it was before and I can actually enjoy life without being afraid of sneezing.

Good luck!