Thank you first of all for taking the time to read this. I am 19 years old and was diagnosed with Chiari Type 1 a little over a year ago. I agreed to have a decompression, May 2014. At that time, my herniation was measured at 17.5 mm...my neurosurgeon removed some bone from the base of my skull to make more room for my brain, and said it was a gamble if that alone would fix all of my symptoms I had been having. (headaches, numbness/tingling in my hips/legs, nausea, vomiting, dizziness, etc.) After my surgery, my symptoms seemed to be improving and I was feeling well. After a period of about 4 months, my symptoms began returning. At that time, I contacted my neurosurgeon to set up another appointment with him to talk about our options. Before my appointment, I had more imaging done and he said it had appeared that area was still heavily crowded due to my deep herniation. At that time, he offered to perform a second decompression, where he would replace the synthetic patch he put in the first surgery, as well as remove a part of the right tonsil of my herniation to create even more room. Because I was in so much pain and in and out of the ER all the time, I agreed. I had that operation in late February 2015. Not more than 2 weeks after that surgery, I became violently ill and we discovered my patch had torn and I had a serious fluid leak. 6 days after I was released from the hospital from my second surgery, is when I had my third surgery to clean up the leak and replace my torn patch. All was well and I was feeling great....until about 6 weeks ago. I began having pains similar to when I had my torn patch and I began getting nauseous and sick frequently. I called my neurosurgeon's office and asked to have an MRI scheduled because I was very concerned with my situation and symptoms. About a week later, I had my imaging done, and last week I found out that my patch has torn, for the second time and I had a fluid leak. My neurosurgeon explained to me that he didn't want to do another surgery within the next couple days, because it is so hard on my body physically and I have had 3 in the past year. He prescribed me Diamox (acetazolimide) to help stop the production of my CSF in my brain to hopefully stop the leak. I have been on the medication for 5 days now, with no improvements. My pain has not subsided in the slightest, in fact I feel as though I am getting worse. I see my neurosurgeon again on the 5th of August to discuss if I have liked the medication or not and the benefits, if any it has given me. When I was in his office last week, he did offer to do a fourth surgery if the medication did not work. I am not skeptical of him or his work, he is an amazing surgeon, one of the best in my region. It's more-so the fact I'm afraid of the procedure failing once again. He said that this time, he would take a skin graft of my thigh, and make a dural patch out of that, afraid that my body might possibly be "rejecting" the patches because they are synthetic. Has anyone heard of this being done and if so were the outcomes positive? At the end of the day, I want my body to be healthy and I want to do whatever it takes to get to that point. I just feel defeated after battling this for a year, and feel at though I am back to square one. Any feedback would be helpful. Thank you in advance.
Shelby, You are a really strong young lady. 3 surgeries in one year has to have been difficult. I am sorry you’ve been through so much. I don’t have information on rejection of patch, but hopefully others here will share their experiences. You can also do a search on past discussions. Also I wanted to mention, I don’t see any harm in seeking a second opinion if only to compare treatment approaches.
Best wishes and Stay strong. And please keep us updated on whatever you may decide.
Hugs,
Laurie
Has there been any talk about putting in a shunt. I also has a leak after surgery and then another surgery to repair leak. My neurosurgeon remove patch and stitched in another patch. That wasn't holding so he glued another patch on top of it. Then I had a lumbar drain which was drained of 7cc of spinal fluid every hour. This was done for 2 days. After it was removed, I gushed spinal fluid which indicated that I would need a shunt. After the shunt surgery, I finally had no more issues due to the surgery.
Wow… You have been thru a lot! 2 things come to my mind when I read your post- #1 get a 2nd or 3rd opinion. #2 Run as fast as you can from this NS… You are very young & do not even realize that yes your doctor may be nice, you may like him but this is your brain you are talking about!! You gave him 3 chances already??? I’d say 3 strikes your out!.. PLease research this more… Your doc is not the Chiari expert you think… When my son had his surgery nearly 4 yrs ago, it was standard for the NS to use a part of the scalp to make a patch. This significantly decreases problems that a synthetic patch can cause… We were told that in our consult. Any NS who says "I’m not sure if this will work to relieve this or that… You do not want to trust operating on your brain… Please check the Chiari list for NS & get at least 2 more opinions so you can make the best well informed decision possible… My heart goes out to you & I’m wishing you all the best!
Also want to let you know I walk my own talk . My 12 yo son is having lots of problems now & we are in process of getting 2nd & 3rd opinions. I really like the original NS but need to get same opinion & treatment plan from other NS.
I don’t want my son to wind up with permanent neuro damage from a botched surgery or to have deficits or to need revisions…I need to have Complete confidence & Faith in the NS before I consent to anymore surgery . It’s a long process… The 1st new NS is requiring my son to see a rheumatologist because of his retroflexed odontoid bone that had changed in appearance from scan 3 yrs ago… Also needs more cervical X-rays in flex/ extension–My son has severe neck pain everyday… something our original NS did not mention or think of last month… Getting a fresh perspective in a situation may be the best thing possible. We can all only do our best to get thru this day by day & take our time figuring out the Very Best treatment plan.
Thank you!
BaltimoreBaby said:
Shelby, You are a really strong young lady. 3 surgeries in one year has to have been difficult. I am sorry you've been through so much. I don't have information on rejection of patch, but hopefully others here will share their experiences. You can also do a search on past discussions. Also I wanted to mention, I don't see any harm in seeking a second opinion if only to compare treatment approaches.
Best wishes and Stay strong. And please keep us updated on whatever you may decide.
Hugs,
Laurie
Thank you for everything you said. Right now, I am on medication that decreases the CSF fluid, so I think that I may take the extra time to get a second opinion. Unfortunately, I have a lot of restrictions through my insurance as to who I can see and not, and it's a long process of referrals, etc to get in to see someone, although I am hopeful. I went to the ER last night because I was in pain and the doctor wanted to perform a spinal tap to drain off the fluid. Something I'm completely not comfortable with. One, being that I don't know everything going on right now and what my decisions will be with recovery, and two because my brother had a very bad experience with one. Just ended up going home and resting on my own. Tired, and in pain but hopeful that in the end I will get this resolved. My best wishes and prayers are with your son.
Brian's mom said:
Also want to let you know I walk my own talk . My 12 yo son is having lots of problems now & we are in process of getting 2nd & 3rd opinions. I really like the original NS but need to get same opinion & treatment plan from other NS.
I don't want my son to wind up with permanent neuro damage from a botched surgery or to have deficits or to need revisions..I need to have Complete confidence & Faith in the NS before I consent to anymore surgery . It's a long process.. The 1st new NS is requiring my son to see a rheumatologist because of his retroflexed odontoid bone that had changed in appearance from scan 3 yrs ago.. Also needs more cervical X-rays in flex/ extension--My son has severe neck pain everyday.. something our original NS did not mention or think of last month... Getting a fresh perspective in a situation may be the best thing possible. We can all only do our best to get thru this day by day & take our time figuring out the Very Best treatment plan.