Pain....

[shirl000]

My head hurts, my neck hurts all the time now. But, I have had upper back pain this whole time. Does anyone else have upper back pain that is assiciated with their leak? The pain is very bad, as bad as the HAs sometimes. Could this be related to my leak or do I need to look into some x-rays? I'm positive it's not muscular, it's pain from inside. Thanks

[LauraL840]

what are you doing about fixing your LEAK? I know several people have advised high volume patches.....

[suebear6]

I have the headache and head tingling feeling (like everywhere I have hair on my head is tingling), neck pain and pressure, tight trapezius and scalenes muscles, and for 15 months I have been complaining about the 2 inch section of my LOWER spine that hurts. I swear it is the spine that hurts and keep telling the doctors it is NOT the muscle and I'm sure it's not because massage therapy does not relieve it AT ALL. Massage does temporarily help with the neck and shoulders (which in my opinion are getting tight because the headache hurts and I am forced to sit up--the headache and sitting up don't jive.
I've been having this argument with my neuro at the Cleveland Clinic since last November about my spine pain (which I think is within a few vertebrae of where my bad epidural that started this whole mess and the blood patches were injected- it's close to the area anyways). The neuro says the spine can't hurt, only the muscles can hurt. I said OK, but if I press of the 2 inch section on my spine it increases both the pressure of the headache and increases the ear pain momentarily, when I stop pressing my spine the headache and ear pressure decrease back. So somehow they have to be related.

He did send me for spine xrays which showed just a little bit of arthritis in the spine.

If only the neuros handed out blood patch referrals the way they write prescriptions. My last blood patch was April 2007. I've been fighting for more than a year to try again because it did help for awhile. Maybe it's my crappy HMO, but they just want to run through the entire list of drugs, PT, vestibular therapy and now repeat the MRI and one last set of prescriptions before they agree to go over the MRI and either repeat the bp or refer me to a neurosurgeon.

Hopefully someone who understands this will respond. All I can do is tell you I have been reporting a similar sympton to my docs for a year now.

Sue

[Concerned Gal]

YES, In my darkest days I had extreme upper back pain. My whole shoulder area just ached so bad, as did neck and head while upright and magically disappeared when I went to lie down. I was especially concerned about it because this is also a symptom of the Chiari-related syringomyelia where the fluid makes little pockets for itself. It's called the cape syndrome as the pain is where you would wear a cape around your shoulders.

Have you had an MRI of the spine? I think i remember you saying you have a chiari malformation (whether it be as a result of leak or not).

If you haven't had an MRI of spine, I would report it to your Drs and specifically mention this condition as you may have a syrinx. Best to check!

[sadlisa]

Shoulder and neck pain is one of my chief complaints. I have read it is a symptom of csf leak. I do have a lot of arthritis where I have disc degeneration at c5 c6. My doctors don't believe I am leaking but I have had a low high pledget value. So I don't know for sure what is the cause for my shoulder pain. Thia

[Michelle ANNE]

I have had severe shoulder and upper back pain. It's not as bad now as it was before my two ebps. My leak is at the c1/c2 level. I do think the pain is leak related, but don't know what causes it.
Michelle

[shirl000]

Thanks for all the replies everyone. I guess this back pain is related to my leak. I wasn't sure. I didn't have another EBP yet, my life is a bit upsidedown right now. My husband and are are going to be moving, he is being transfered, I don't know how on earth I am going to get through this move with my leak. I have no one that can take me to the hospital or take care of me afterwards. It's been pretty depressing, I haven't got one family member within 1000 miles of us. I have been pretty distraught about everything, not knowing what to do. We have wanted this transfer for a year now, before my leak, and now I don't want it because I can't move off the couch or bed, much less move to another state. He just got back yesterday from TN, where we would be moving to. It's so crazy. *sign*

.....my head hurts!:(

[curranmom]

Hey Shirl - See if maybe your doc will admit you for a day after the patch as an inpatient. Mine did after I think my 4th for a better sticking chance. Or I know the hospitals around here allow what they call a 23 hour stay as long as your out before the 24th hour hits you should be ok, but I would check that all out with your insurance and hospitals first just a thought. Sorry to hear that your still not feeling well, its an unpleasant ride that's for sure! Take care.

K