Need Help Please, what is this?

[mbrfz]

Hi everyone, I am having the following new problems and need your help figuring out what they are. Just a reminder as I havent posted in a while I have full body rsd , worst areas, legs, left shoulder and arm, hands, spine.

I had two deep cervical nerve blocks a couple of months ago. this was to stop my tounge from rolling and severe tooth pain. all on the left side. The blocks were so so painful but they worked on the tongue rolling and tooth pain=trumingel nerve I belivie. DR. S ordered them.

Since then I have had severe neck pain, swelling of my jaw , on the left side only. All lymph nodes swollen up the back of my neck- right into the back of my head. Swollen lymph nodes on neck and a recurring back rash. The rash is severe- it looks lilke i was attacked by a wild animal.

Given all that- the worst problem is that I can not hold my head up. It feels like my head is sitting directly on my spine. I have to use both hands to lift my head off the pillow in the morning. and to move it many times through the day.My ear is filling with fluid constantly- the left side only and my nose then literally runs for several minutes. the ear fluid filling is constant.


I was reading your posts on the cranial leaks and am wondering if that is what I have. I went to the ER over the holidays for the rash and they put me on a steriod pack- big mistake.. after taking steriods for three days out came the swollen lymph nodes everywhere.

So right after the holidays I went to see my internist who said it was my immune system. That i never should have been put on a steriod pack as now the steriods has attacked everything- bad bacteria and good thus all the swollen lymph nodes. I kept getting worse= she told me to do nothing to wait it out.

But it kept getting much worse. Can't hold head up and rash recurring and spreading. lymph nodes very swollen and painful. SO I went to my Pain management specialist- he thought it was shingles.( He came to his office on New years eve, can you belivie it? He put me on Valtrex. it did nothing and rash still here. ear still full of fluid and I still can not hold my head up. Internist gave me neck brace to hold my head up..
The valtrex did help the one large swollen gland on my left jaw.

Any ideas what this is, it is very scary. Should I ask for an MRI or cat scan. Just one more new symptom. Just under my right breast , upper adbomen, swelling and rolling feeling or something that is in there. Not pain- pressure.
thanks for listening sorry this is so long. but very concerned that I have no spinal fluid left and what this might be doing to me.
Just in closing- the internist and the ER doctors did not think it was shingles. thank you so much Lisle(mbrfz)

[Silver Swan]

Dear Lisle:

Suggest you look up on Google "CSF leak". Fluid in the ears and coming out of nose suggest a leak. I have a cyber friend who had just the fluid in the ear - she just had a CSF leak repair because it was a CSF leak. She had had surgery for Trigmeinal Neuralgia.

Have you seen an ENT doctor or neurologist? Check out the fluid in the ears and nose.

Shirley H.

[repeat leaker]

I have been having a lot of facial pain, associated with neck pain and positional headache. I was curious to some insight into trigeminial neuralgia. What I have read said this is usually short stabbing pains, any insight? My pain is more of a constant pain, intense but not "the worst pain I ever felt".

Thoughts?
RL

[PainInTheNeck]

Lisle...

It is awful what you are going through. Are you close to a big medical center? i.e. Mayo Clinic or Cedar Sinai? I think you are far worse sick than I have experienced but I finally had to just go to a major hospital's satellite hospital and beg them to admit me. My thinking on that was that I couldn't handle the "out of sight, out of mind syndrome". You know..where the docs see you once a week or once a month and feel just awful for how sick you are and make an appt for a week or two down the road or send you to a different specialist. I wanted to be "IN THEIR FACE" so they had to work quicker at finding what was wrong with me and what would help me. Of course, I didn't tell them that. What I said was just that I absolutely could not handle this amount of pain at home anymore and I also was dehydrated and wanted I.V. fluids. By the way...I found that a fast drip I.V. fluid certainly made a difference so I started insisting on that on my many trips to the emergency room(s) also.

Best of wishes to you.

[GingerLox]

Dear MBRFZ~

Are you aware that RSD is an autonomic dysfunction, that originates out of the brainstem area? My dsysautonomia is not of the RSD type, but I have been a member of the National Dysautonomia Research Foundation Forum for years, and I have been to a National conference on the issue. RSD is a part of that disorder.

Have they ever checked you for the Chiari malformation...where the bottom portion of your brainstem extends out below the skull? The hole in the skull is larger in some people, and if all the right conditions exists (low CSF levels are one) the brain can sink into that space.

When I was first sick.........I had many instances, and still will occasionally where I cannot hold my head upright. It's not painful, it just feels like I'm sinking and lost muscle control. It usually passes quickly for me.

If I may ask.........could you bring me up to speed on the onset of your disease activity. Consider everything relevant.

I think that your situation sounds very similar to mine regarding the brainstem damage, only yours is hitting a different region of the brainstem. And as I mentioned in another post, I feel the dysautonomia is affected by the CSF leak and the amount of CSF that is keeping the brain buoyant.

I honestly think that you are being pigeonholed and that the doctors need to look at your situation from another direction, not just treating the RSD. That happened to me with my diagnosis with Lupus for many years. They need to think outside the RSD box with you to get you more answers. I think your RSD should be looked at as a secondary disorder............but I am NOT a doctor!

http://www.emedicine.com/radio/topic149.htm (Chiari Malformation 1)
http://www.emedicine.com/radio/topic150.htm (Chiari Malformation 2)
http://www.ndrf.org/ (National Dysautonomia Research Foundation)

~Ginger

[mbrfz]

Thank you so much for your posts. I am following up on all advice now. I woke up at 2 am this morning again with my neck tothe right unable to hold upright alot of pain and had to put a neck brace on to hold my head in position. It is 9 am and I am still using the neck brace to hold my head up.. I am going to visit the sites you recommended and them come back and wrtie the full story for Gingerlox as requested. I need to wait for my morning meds to kick in to type that much . I am so appreciative of your responses. Your right I am getting more and more frightenened waitng for apptss. a month apart for help. this is getting worse and worse.. I will be back on to replay shorthly and again thank you so so much. Sinceerely Lisle

[vheadley]

I am a nurse and I dont know what your problem is but I can tell you that you need to go to the nearest ER and demand that they take you seriously and find out what is wrong. You are describing some very serious medical problems and it should not be taken lightly. You need medical treatment now not in a few days. You could be experiencing a medical emergency. I stress COULD BE..... I too am not a DOCTOR. BUT you need to demand that a doctor treat you. As a patient you have a RIGHT to timely treatment. and they have a RESPONSIBILITY to give you such. If you were a family member of mine I would have you in the ER and would not leave until you were admitted and answers were found whether I were satisfied with them or not. I know that our medical profession is horrible but as a nurse your case makes me ashamed to be part of it and I truly apoligize for what you are going through!!!!!

[LauraL840]

I am a nurse and I dont know what your problem is but I can tell you that you need to go to the nearest ER and demand that they take you seriously and find out what is wrong. You are describing some very serious medical problems and it should not be taken lightly. You need medical treatment now not in a few days. You could be experiencing a medical emergency. I stress COULD BE..... I too am not a DOCTOR. BUT you need to demand that a doctor treat you. As a patient you have a RIGHT to timely treatment. and they have a RESPONSIBILITY to give you such. If you were a family member of mine I would have you in the ER and would not leave until you were admitted and answers were found whether I were satisfied with them or not. I know that our medical profession is horrible but as a nurse your case makes me ashamed to be part of it and I truly apoligize for what you are going through!!!!!

That post was 13 months old! Don't know how it resurfaced but the date was January 11, 2007! :)