Neurofibromatosis and Pain Management

[Raenwood]

I am a late 20's male with Neurofibromatosis Type 1, my last MRI in Dec 2008 showed multile tumors all along my spine,  at that time my Neurosurgeon decided that surgery was out of the question and there was nothing much he could do for me, (I have been seeing him for 8 years now and trust his input).  He then told me to seek a Pain Specialist.  I looked around, made some calls, and visited some around my area,  they are hard to find, none of them could help me for some reason, they jut seemed to want to put me on Pain Meds.  Nothing wrong with them unless you have to work for a living, and cant take them while working.  Right now I am totally lost on what t do next, I am in constant severe pain, 7-10 on a chart, my entire right side from my toes to my neck and down my right arm are in a constant state of pain,  hard to explain it its a burning, stabbing schocking like pain,  lately I have been expirencing loss of mobility in my right extremities, and loss of control with my right hand, (dropping things unintentally).  Its driving me nuts now,  all I want to do right now is have 1 pain free day, without being looped out on meds, so I can enjoy life.  Please if anyone has input I am ready for some relif.  thanks

[turbinwife]

I have been dealing with major pain issues from NF2 for 20 years now.  I just happen to find this forum & was reading ur posts. U mentioned the clinics in AZ, FL & MN----R u talking abt Mayo Clinic?  If not, I wud be much interested in knowing who it is.  I'm always looking for help in Pain Mgmt.  I currently have a Pain Specialist--but always open to anything new and maybe better.

[Tuckamore]

I am glad to hear that you have found a physician that has taken the time to explain things to you. That can make all the difference.

I too have multiple cysts on the nerve roots of my spine. I have seen a neurologist and than a neurosurgeon. The cysts are inoperable but there are several kinds of cysts and many are operable. They explained it to me that it would be like operating on wet tissue paper. So I live with the pain to a large degree. If it weren't for the fact that my SIJ causes so much pain I am sure I would notice the pain from the cysts more.

Again I am glad that you have found a god physician and that your pain is more controlled. Thank you so much for the update. We'll look forward to hearing from you again.

Take Care,
~Tuck~

[Raenwood]

Sorry I just saw that is is 25mg 4x a day on the Topomax

[Raenwood]

Been seeing a Pian Specialist the last few months, been trying me on different meds, Currently on Ryzolt 300 1x day and Topomax 10mg 4x a day, still getting used to it but it seems to help a bit, still have burning pain at the base of my spine.  But the Pain Doctor sat down with me and explained my last MRI in detail in a way I could understand it.  He basically said that I have enlarged nerve roots coming out of my spine due to Cysts on the Nerve roots, and pretty much where i dont have a cyst I have small tumors growing.   So his plan is to help control the pain for now caused by this than when I get comfortable without bein totally spaced out, then the next step is to set me up with another dictor that may be able to help do something,  but he does not know.  All and All I am doing okay I guess, just feel like everything s falling apart arround me, still working though,  and they are working with me to help me out to keep me working. Ill keep you up to date...sorry its been so long to repost.
-Dan

[Tuckamore]

Hi Again Dan,

You should never "settle" for what you feel is inadequate treatment from your physicians. It is important to each and everyone of us that our physician shows interest and concern for us. Often we forget that we pay them. They are service providers, obviously highly educated and trained but non the less they are still paid service providers. Is there another neuro you can see at the same clinic?

It may take you months to get into a nationally known clinic. If your benefits begin in November I would make the call now and set up the appointment. Good luck and please don't forget to let us know how you are doing.

Tuck

[Raenwood]

Thanks for the Info, I live in the Seattle area, and have been seeing the a neurosergeon at the University of Washington since 2001 when I had my first major surgery,  but as of late, it seem he has no time to talk, and I only see him for at most 10 minutes and wants to focus on one issue, one area then out the door I go.  I just started a new job so benifits ae a bit out right now till November, but I am interested in the clinic in Arizona, or something close to me.  But as far as meds right now my job entail the use of forklifts and order pickers and other equiment.  Right now I am just getting really afraid this loss of control is going to get out of hand on my right arm, been dropping stuff all the time if I dont have a good grip on it.  thanks again for the info and Ill keep you up to date.
-Dan

[Tuckamore]

Hello Raenwood,

Welcome to the Pain Mangement Forum. I am so very sorry to hear of your painful condition. Please forgive my tardiness in responding to your post. Many of us, although not effected with your disease condition, suffer debilitating pain also. I understand your plea for one pain free day.

Your profile page does not indicate which state your reside. According to the reading I have done and the limited knowledge that I have of your disease condition there are some treatments available. I am not in a position to recommend one clinic over another, not only am I not competent to do so I beleive that every one's experience is different. There are major clinics in Arizona, Florida and Minnesota that claim to be one of the leading international treatment centers for Neurofibromatosis. Have you been to a major international clinic? If not my suggestions is that you begin the referral process with your physician and insurance.

I understand your concern with not taking opiates. I continued my professional career for many years in constant pain, taking as few pain medications as I could and still function through the pain with opiates in my system. But I weighted the pros and cons. Without the opiates I could not of remained in my career as long as I did. Finally there was no choice I could no longer continue my career, opiates or not. So unless your position demands that you work with dangerous equipment or something similar like driving I encourage you to take medications that will ease your pain.  

Weekend are normally a bit slow on the forum. Hopefully others will post and offer additional suggestions. Please let us know how you are doing. I will look forward to your updates. Sometimes this journey through pain can be eased by sharing your employment struggles and painful challenges. Best of luck to you.

Take Care,
Tuck