Have you heard of Schwannomatosis?

Dercum's Disease
#1

Have you heard of this? A Dr. Nath in Texas is researching this and operating. If you look it up beware of the pictures! Not for the faint of heart! Pam have you looked into this? I wonder if it could be related to DD? Grandma Sylvia

Schwannomatosis is a rare form of NF that has only recently been recognized. People with schwannomatosis develop multiple schwannomas on cranial, spinal and peripheral nerves–but they do not develop vestibular tumors and do not go deaf. Affected individuals usually have much greater problems with pain than with neurological disability, although as with all forms of NF, a schwannoma tumor may vary greatly between patients.

#2

Hi Sylvia,

Yes, I had heard of this before, but I looked it up again to refresh my memory. The tumors with Schwannomatosis are not lipomas, so I’m sure I don’t have that. Mine have been biopsied, and I know Dr Herbst would have known the difference immediately and ruled out DD. For those whose DD has not been diagnosed yet, that may be one of the other diseases to rule out first though.

Hugs and spoons,
Pamela

#3

Hi Sylvia,

You can ask her! Just post the question on my group. She is a member and she will answer you! Then you can share what she says here.

Hugs and spoons,
Pamela

#4

My grandmother had this. Back in the early 90’s she had 3 vertebrae removed and had a schwannoma removed from inside of her spinal cord. Her’s was the size of a nickle when they took it out. She had severe headaches for years and didn’t know why. I feel for anyone who has these.

#5

Wow! Very interesting. I wonder if a relationship exists! Would someone ask Dr. Herbst if she has researched this? We have so much to still learn about disease. Thanks for your responses. Hugs, Grandma Sylvia

#6

I wonder if this could have also been called a back “mouse”. Dr Herbst sent me an article on herniated back fat (back “mouse”) and I have yet to get any relief from back ache. I also have been getting headaches that make me want to throw up and get irritable

#7

You should try the acupunture. That does help with my headaches along with a heating pad. The warmer the area is the quicker my pain goes away. I get migraines in clusters. My husband said that when I get them that he can set his clock to it when they hit. They will wake me up out of a sound leep at the same time of night every night. They throb all through my head where I just want to curl up and rock back and forth. I alse use biofreeze and take extremely hot showers. I am now using eucalyptus oil and lavendar oil on a rag. I put this in a clean sock with rice and pop it in the good ole microwave. This gives great aroma therape. I hope this helps. I was taken off of all my migrane meds to stop rebound headaches from the pain meds. This is something to consider too if you are taking the same pain med all the time. (Excedrine migraine medicine is the WORST thing you can take according to my migraine doc)

#8

I have always used Excedrin Migrain with an ice pack. One thing I recently found out is that the terrible headaches that wake me up are probably due to my severe sleep apnea. My brain is only getting half of the oxygen it needs so it wakes me up to breath. I start with the face mask tomorrow I am too tired tonight. I also have in addition to the cpap an oxygen machine that hooks to it. I only have to use the oxygen when I sleep for now! I don’t see how I will sleep in that thing. Maybe you should get a sleep study to see if your headaches are from sleep apnea also. I spent many years telling the doctors about the wake-up headaches and they never figured out it was due to oxygen deprivation. Hugs, Grandma Sylvia

#9

What I was saying about the excedrine was that they cause rebound headaches. I used to take them daily for my migraines. My migraine doc said that this medicine causes rebound headaches. I used to wake up with screaming headaches. I had to go in for halo injections on my head. After this I didn’t take any meds for migraines for 2 weeks. I suffered a bit while this was going on, but aren’t we all used to that by now? The halo injections worked. He said that the use of pain meds will cause multiple kinds of headaches. Once they compound you have to completely remove yourself from all the meds and it might help stop them completely. I was fine for several months after the treatment.

#10

i had a shwannoma removed from my left clavacal area of shoulder 3-4 years ago it was a fair size and they also found another 2 small ones a bit further in, the thing is that now this shoulder of mine is ridiled with aliens now but the difference is these do not show up as clear as shwannomas do so as far as the pnu consultant is concerned my pain is being caused by scar tissue [ what a jerk ] oh pnu stands for perival nerve unit
hugs wishes and lit candles with prayer
to you all x- x HELEN

#11

Helena…I don’t know if you are on the web site with Dr. Herbst but please send her the info on this…that you had some removed. I think it is of interest. Perhaps their is a relationship? What does your doctor say about you having both? Oh, that is right he does not even acknowledge your DD…Hugs, I am so sorry that you have had such shoulder problems. I know I can’t sleep on my left one at all it is full of very painful lumps. I think the shoulder joint was one of the first places mine started. It just kills me to more it. They used to call it a “frozen” shoulder. Mine pops and crackles if I rotate it. I try to roll the joint frequently to prevent adhesions. Hugs with my better arm to you!!!Grandma Sylvia

#12

Sylvia,

Are you sure you don’t have a torn rotator cuff? I suffered with one for quote a while before I had a MRI and it was discovered.

Hugs,
Pamela

#13

Grandmasylvia
Never occured to mention this when i filled in questionair for DR/Herbst not sure how to tell her about this or wether it would be signifcant.
Went to my gp today as i could not stand the pins and needles across my back from shoulder to shoulder agreed he did not want to increase any pain meds so after examination rx a soft support collar to help relieve the pressure of spinal collar from the large hump thats pressing on it to wear 3 xday 2-3 hours each time with extra diazepam for muscle spasm, hope this helps as i cannot use my loyal tens machine in that area as even the mild sensation makes the pins and nedles scream more.
Sorry the winge ,thanks for your response lit candle, gentle hugs from HELEN