struggling

[ibelieve]

Hi everybody! I new here to this forum. I've been a member of an SCI forum for a while but am one of the few there with SB. I skimmed over a previous post about finding doctors for adults with SB and I am having the same problem.

I was not diagnosed until I was almost a year old and since I didn't have any symptoms my nuerosurgeon thought it best not to do surgery. I had my first tethered cord release about 2 months before I turned 18 and my second at 24. Now I'm nearly 27, my cord is retethered again, I've got muscle atrophy in my right leg and unresolved issues with my bowel.

I have searched high and low and can't find anybody who knows anything about my bowel impairment. I finally went to see an adult neuro hoping he could help and he basically told me that SB is a pediactric condition and to go back to my pediatric neurosurgeon (who did both of my surgeries). Problem is he is 5 hours away from where I live and I don't know if he'll be willing to see me or not. I've contacted his office and am waiting to hear back from them.

For me even though I have a birth defect I didn't know anything about it until I started having problems. It's been really really tough as I struggle to learn about and understand my condition without the assistance of a doctor.

[usolyfan]

Where do you live?

[ibelieve]

South Texas

[usolyfan]

Have you contacted the Spina Bifida Association in Texas? I know they have two separate groups.

[ibelieve]

Yes but I am unable to go to the meetings because it is quite a distance away and aside from the fact that I work those evenings I would have to drive through rush hour traffic to get there. I have emailed them to try and get a list of doctors or resources but have not heard from them.

[UpNorth]

I'm sorry you are having such a hard time. :(
My dh never had any treatment for his Sb except introducing him to catheterization in his late teens when he lost his bladder function. He had his cord release at 30 which was probably about 15 years too late. His surgery at that tijme was done by a pediatric neurosurgeon- Fred Epstein. SB is considred a pediatric condition becasue those dh's age were simply not treated.

[HelenCate]

Geez..I'm really hoping these neurosurgeons and such smarten their ideas up, because it's not 1960 anymore, and there are tonnes of us in their 30's, 40's, 50's and 60's and we are going to be having problems that come with age and that are exacerbated by our condition and they need to be there for us.

[ibelieve]

I will be calling my pedi neurosurgeon bright and early tomorrow morning and will keep calling everyday until I get a reply. I called last week to see if I could fax him the MRI and nerve conduction results and just get his opinion over the phone or something but now I'm thinking maybe I should just set up an appointment and make the trip up there. I had thought about trying to get in with a pediatric guy here in my city but my neurosurgeon has known me since I was an infant and I wouldn't trust anybody else anyways.

I started my home program for physical therapy for the muscle atrophy and oh man am I sore!!! But hey if it strengthens my legs and keeps me walking in the end I guess it's worth it.

[Summer25]

I have been having this issue as well. I see a neurologist who wanted me to see a neurosurgeon. So, he refered me back to my peds neuro. Well of course the whole "Well your 25, so he won't see you," came from his receptionist's mouth. He was in China anyways. Waited until he came back and called again. Another receptionist said she would ask him. Well, he said he would gladly see me, but what would happen if I needed surgery, because the childrens hospital wouldn't allow him to do it on me? Well, good question. He refered me to the main hospital here and sent me to another neuro. Well needless to say, she had absolutely no clue what was wrong and blamed my hands going numb on a nerve problem in my hand. Even after I told her many times that the hand only went numb when my neck hurt. Almost classic sign of arnold chiari problems. So, she wanted to do an EMG. Yea, not going to happen on me. Then she wanted to do another MRI of my head and neck in 6 months to see if the chiari changed which would indicate tether cord, because an MRI of my back would show nothing due to rods. So, I looked at my last MRI when I was 18 and the herniation of the chiari hadn't changed since then, so how can she say it was tc...yea. Needless to say, I went back to my neurologist and basically in nice words told him she was crazy and that an EMG wasn't going to show anything, so what was the point. He agreed and even agreed that it probably wasn't tc either. So, now I am back to square one, without a neurosurgeon. I am thinking of calling the peds neuro again and just ask him if he will just look at the recent MRI and get his opinion. Or if he can refer me to another neuro. It is just frustrating. So, I know your pain.

[ibelieve]

I don't get it!! What are adults with SB supposed to do? The adult neuro docs won't touch us with a 10 foot pole becuase it's a "pedicatric condition" and the pedi docs aren't allowed to treat us. Makes no sense! We don't just stop having sb or sb related problems once we hit 19 years of age.

That said (sorry for the rant) all we can do is keep trying until we find somebody willing and able to help.

Does anybody know if there are any sb advocacy groups that can help correct these situations? There's just got to be something we can do if we all work together!

[ibelieve]

I saw my urologist today and told her about my struggle to find a doctor. She looked at the list I brought of neurosurgeons on my insurance plan and recognized a couple of names right away. She went and called one and explained my situation to him and he said he'd be happy to see me and that there is minamally invasive procedure out there now.

Anyways, hopefully I can get in to see him soon and get some answers.

[kidsrustx]

Where in Texas are you? My son sees a neurosurgeon in College Station. We're lucky because he is a pediatric and adult neurosurgeon. AND he's excellent!

[LisaJoy]

My last neurosurgeon also saw both adult and pediatric patients -- they are the best for adults because they have the most experience with sb. But they are increasingly hard to come by. Mine retired; don't know what I'll do if I need to see someone.

[Wrangler]

Hello and welcome. I too am without a Doctor that knows a lot about spina bifida. I have a good doc that treats my acid reflux very well but I know what its like to not have a doc that really understands spina bifida. I have bowel and bladder problems as well but all docs just tell me to drink all the water I can stand and to take laxatives. Yes, it is very frustrating. Thank God for forums such as this so that we all at least have each other.