I have so many decisions to make and I am honestly overwhelmed. I have had a constant headache since surgery 18 months ago. I took fiorecet then naproxen. A headache specialist has now recommended nerve blocks for occipital neuralgia. In September I have a genetics evaluation for EDS. My NS said he does not know why I continue to have trouble with things such as balance, coordination, choking, heart palpitations and breathing. He has now recommended an Evoked Potential Evaluation to see if there is trouble between my brain stem and my extremities. I want to see Dr. Fraser Henderson in Maryland and I asked my PCP to refer me but she said she would rather wait until the Evoked Potentials, nerve blocks and genetic testing are done. That would mean 5 more months plus the 9 month waiting list.
I am terrified of the nerve blocks, both because of pain and because many people say they do not help. I am terrified of the Evoked Potentials because the NS said it is painful. By the time I get to Dr. Henderson, I will be 3 years post surgery. I am on the same treadmill I was on before I found out about the chiari. No one knows anything and no one can help. I’m exhausted from holding my own head up; exhausted from dragging my body through life.
I’m so sorry you seem to be having an uphill struggle. I have no real advice as I’m very new to this but I would go back to your pcp and ask again about being referred, I don’t have any experience of this,though ad I’m in the UK and our health service is totally different.
Abby: Yes, that sounds like my symptoms. Both my brain stem and cerebellum were crushed prior to decompression. But my CSF has been normal since surgery. I fully expect that second some day will diagnosed CCI but my current NS will not and I can’t seem to get the referral I need for Dr. H. My PCP thinks I’m in good hands with my NS - and I think he did a fantastic job but no one knew I had EDS and now he won’t even consider EDS or CCI.
The headache specialist has experience with EDS and confirmed it but said it is getting harder to diagnose due to my age. I feel like so much time is being wasted.
Karla, don’t wait for the referral to dr Henderson. Just send in your paperwork and MRI yourself (including a note that you are concerned about CCI!!) and they will give you an appt date. I didn’t get a referral till a couple of months before my appt date. His website says he prefers it if you are referred, but not a must.
I had nerve blocks done by means of Radio Frequency Rhizotomy. I have no pain to very little pain and need no pain killers. I do not feel the head aches thanks to the rhizotomy and just feel very sorry for everyone who battle so badly and take pills in vain. Pain pills damage the kidneys and have to be taken with care.
The Rhizotomy was done in theater under anesthetic and you feel no pain. When you wake up it feels dull on the first day but soon all of this is gone and your pain should be gone. Mine was done. Even my decompression was not so painful because of this.
You know, I was just thinking, they didn't ask for a referral when i made my appointment. i just saw Dr. Henderson for the first time. I live about 40 minutes or so from him. And my appointment was supposed to be may 28th. I got a call about a month ago, saying I had an appointment that next monday at 5 and to confirm or cancel. I didn't have my referral yet...I didn't have my ct scan yet. But I made an appointment for the ct scan really fast and I called for a referral and I went! I didn't even have medical insurance to cover the visit yet. LOL But I wanted to get the ball rolling. But anyway, when I made my appointment, they didn't require a referral at that point. And actually I'm assuming my neurologist sent my referral. I was having a hard time with the referral because it was last minute. But the important thing is that to make the appointment, I didn't need that referral. They'll email you documents to fill out. You print them and fill them out and scan and return them or mail them if you want. and they'll review them and email you your appointment date. And you just need that referral before your appointment. So, you could make the appointment, and get it going since it's such a long wait. It was 7 1/2 months when I made my appointment. And then meanwhile do what your doctor wants, and work on getting that referral in the meanwhile. Maybe the genetic test she wants is the same that Dr. H has you do. That would save some time. There are some tests Dr. Henderson wants you to have done ,(like the upright mri and ct with flexion and extension) but if you're out of state, you can schedule them for when you get here. One of the locations for the ct scan is in the same building as Dr. H's office. and one of the mri locations is very close too). Dr. Henderson has me coming back in two more months (he said two, but I couldn't get an appointment for three months...and that was a month ago) when results from some tests he wanted me to have done will be in. So genetic testing, blood work another MRI. So I'm very glad I got a call to go two months earlier than expected. But I would definitely call and make an appointment, knowing you will have a long wait ahead of you. And then work on getting your referral. And like I said, if you're out of state, you can get your mri and ct scan when you get here (Dr. H likes them a certain way and the labs in his area know how he likes them. I couldn't find a lab in Baltimore to do them...and Baltimore has some amazing hospitals). It is all overwhelming! But we just have to take it one day at a time. One step at a time. And know that thanks to amazing neurosurgeons like Dr. Henderson, we've got a better chance at better quality of life. Hang in there! Hugs and God bless!
Have you looked at the beighten and brighten score? Not certain of spelling. But I know that most doctors know that some people can no longer do some of the things (like thumb to wrist) due to arthritis, but patients could do it in the past. So they base it on that. And the brighten score is a lot of medical history. Prolapsed bladder, uterine prolapse, mitral valve prolapse...stuff like that. Dr. Henderson diagnosed me with EDS. Maybe you could talk to your PCP and tell her that you just want a second opinion. It is your health. I feel you should have the right to see which neurosurgeon you feel most comfortable with. I know personally, I a great deal of anxiety lifted when I settled on Dr. Henderson. My PCP didn't write my referral, actually my neurologist wrote it. I don't know it that would help. Maybe your neurologist could give you the referral. Anyway, I'm just still thinking about this. You don't worry! Things will work out! Lots of prayers!!!
