I have a few questions for anyone on the board who either has experience with what I am gonna post or ha any advice. But before I post those, I will let you know a little about us & our story.
My husband was diagnosed with Chiari & Syringo back in 2002. He underwent his decompressive craniectomy in November of 05. Since that time he has been on pain management, receiving botox injections in his head every three months for the headaches & on a number of other meds to help with pain & discomfort. For the last eight years we have been fighting the VA to give him a higher rating for the spinal damage & pain. They first rated him at 10% and since our appeals he has been given 60% but, they still have "mild" pain on the diagnosis and we are fighting them to let them know he is experiencing more than just mild pain & discomfort. This condition & it's progression even after surgery has changed his life. He has never been the same.
Here are the questions:
1. For the last three months he has had an ongoing rash on his lips. We are not sure if it is associated with the syrinx or maybe a reaction to meds. The rash is red but some bumps look like they have puss inside. He tells me he feels like his mouth is on fire & nothing seems to relieve it. He went to the ER (VA) last month and they gave him allergy meds, which actually seemed to help but a few weeks later it came back with a vengeance. Nothing he puts on his lips is helping & he doesn't know what else to do. Does anyone know if this is associated with the condition or has anyone experienced this?
2. VA doctors are NOT very knowledgable with Chiari & they never take his complaints seriously, which has led him to great depression. We are actually looking into looking for a neurosurgeon who can help us, but since he is a veteran... we can't just go anywhere. Does anyone know any good neuro surgeons in the Tampa FL area that night be willing to give him a consult to see him?
My first thought about the rash is shingles. I’d like to say that his docs probably looked into that but it’s become apparent to me that it’s really easy to overestimate these doctors!
I think it is so wise to look for a new surgeon. However, it’s not just any surgeon that you need. You need a true Chiari specialist who understands not only the Chiari but also the other afflictions that can be connected to it (ELhers Danlos syndrome and POTS). Beeba suggested Trumble (great suggestion). There is also a list of member recommended surgeons at the top of the home page. Many of us have struggled to find the right doctor. It can feel like a mountainous climb at times just to be taken seriously. It’s humiliating, devastating and easily depressing. Please take comfort that there are amazing surgeons who really “get it” and actually help people and improve their quality if life.
Thank you so much for the replies. I am going to look into this Doctor you mentioned in Orlando. I do not have his scans because the government is very difficult when it comes to obtaining them, I do have scans (hard copies) pre surgery though, but that won't help much considering he had surgery & the syrinx that they told us would collapse after surgery is still there and has caused other issues like bulging discs all down his spine, and other things. I do however have his medical records on a disc that I obtained with reports from his MRI's. They just wont release the actual scans to us. But, I will look into this doctor. The CHiari walk across america is in a few weeks so I am also hoping to connect with help at this event. Thanks again for your responses. He has an appt. today actually for the rash across his mouth, I am hoping they help him.
No the scans are not on a disc, just the reports. When I requested all of his records that was all they sent, no scans just reports. I will have to look into getting the actual pictures.
I'm happy to take a look at any images. Just google me and my web site will show up, with address, etc.
He should have recent(at least within the past year) MRIs to assess Chiari and syrinx(ideally with flow studies). You may want to raise your concerns with the VA and ask for referral to a specialist. it is generally hard to get outside the VA system but we do see a fair number of TriCare patients when specific Chiari issues arise. for the VA to pay for it, it does require a referral from them.
Hello, My name is Kendra and my husband's name is Ryan. He is a veteran, had the chiari decompression, contracted bacterial meningitis, then developed a syrinx. Our story is so close to your it seems crazy. Thankfully we used private insurance for his surgery, but we are now dealing with the VA because Ryan lost his job after being unable to work for so long. He has a rash on his back and abdomen that is exactly like what you described and no one seems to know how to treat it. We aren't sure if it's med related or not. Unfortunately we are in Mobile, AL, but if you are able to make the drive, Ryan's neurosurgeon is one of the best and insurance is not an issue. I am so sorry you are going through this. I believe as a veteran our soldiers should receive the best care available.
Hi Kendra, thanks for your response. We have been appealing the VA for 8 years now & we won't give up. Although they do not rate on chiari due to the question of it being a ceongenital disease, they do rate on the issues arise due to aggravation while in the service. They are very uneducated though with it comes to his disease & his symptoms. They are never sympathetic either which only ads to our frustration & pain. But hang in there & don't give up! What is the name of this doctor in mobile? We are looking around and will do our research on him as well. As for the rash, we wouldn't stop hounding his doctor & new the y have ordered allergy testing for him, so we are trying to rule everything out. When new symptoms arise, keep him at the doctor until they work hard for him & help him!!
Kendra said:
Hello, My name is Kendra and my husband's name is Ryan. He is a veteran, had the chiari decompression, contracted bacterial meningitis, then developed a syrinx. Our story is so close to your it seems crazy. Thankfully we used private insurance for his surgery, but we are now dealing with the VA because Ryan lost his job after being unable to work for so long. He has a rash on his back and abdomen that is exactly like what you described and no one seems to know how to treat it. We aren't sure if it's med related or not. Unfortunately we are in Mobile, AL, but if you are able to make the drive, Ryan's neurosurgeon is one of the best and insurance is not an issue. I am so sorry you are going through this. I believe as a veteran our soldiers should receive the best care available.