Help on syringomelia

My mom has syringomelia  -14years now. She has undergone sugery about 15years ago. Over a period of time the condition has slowly progressed. Common symptom are numbness, fluctuation in pressure, heat, loss of strength in right hand and leg. She has not complaint of pain but is concerned about the following

1. Excessive heat build up on the head (day or night....can physically feel it). sweats when this happens
2. Excessive secretion of fluid from mouth...saliva
3. Stroke in the tongue (has moved to one side)..slur speech
4. Bitter feeling on teeth and tongue and lips get red......this is really causing discomfort. is it related.
5. If she has difficulty in swallowing what does this mean and what must one do.
6. Is there any other patient with similar symtoms (symptoms), how are they managing.
7. She cannot get her sleep in the night
8. burning sensation on tongue and lips...what can be done

I would apprecaite any advice that can be given. Is there a patient in South Africa that i could contact or a doctor that deals with this condition in South africa.

[*Stormy*]

Hello and Welcome,

I do not have a syrinx, but do have Chiari. Has your mom ever been looked at for possible Chiari? What type of surgery did she have for the syrinx in the past?

A lot of the symptoms you describe are symptoms that I experience or experienced before surgery. Where is her syrinx located? What I find interesting is that she is having a lot of symptoms in her head (swallowing, tongue problems) which I wouldn't think would be caused by a syrinx...but I am not an expert of course. I know there are several people here that have one so maybe they would know more. To me, that sounds like symptoms caused more by brain stem compression, which can be caused by Chiari.

What type of testing has she had done? I would ask to have a full MRI scan done to determine what is going on. We do have a list of specialists here, but I have a feeling that South Africa isn't on it, but in case you decide to travel:

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

If you can't find anyone close to you with the name of a good Dr, then make sure you research as much as you can to find one that has experience with SM. I would recommend skipping right past a NL (Neurologist) and going directly to a NS (neurosurgeon). Most of us found we got little or no help with a NL.

As for management of symptoms, I get the tongue (bitterness, burning, tingling) thing sometimes really badly and I find chewing gum or sipping ice water with a little lemon juice in it really helps.
For swallowing, make sure that food is cut up small, have a drink on hand to help get it down and avoid any hard to swallow items that might get stuck (bread etc..). Has your mom ever had her gag reflex checked? That is one way to tell if there is cranial nerve damage there and really affects swallowing as you have no feeling at the back of your throat.

Your mom is so lucky to have a daughter like you who is out there advocating for her! I hope that you find a good Dr to help her!

Take care,
Carolyn

[*Stormy*]

Hello and Welcome,

I do not have a syrinx, but do have Chiari. Has your mom ever been looked at for possible Chiari? What type of surgery did she have for the syrinx in the past?

A lot of the symptoms you describe are symptoms that I experience or experienced before surgery. Where is her syrinx located? What I find interesting is that she is having a lot of symptoms in her head (swallowing, tongue problems) which I wouldn't think would be caused by a syrinx...but I am not an expert of course. I know there are several people here that have one so maybe they would know more. To me, that sounds like symptoms caused more by brain stem compression, which can be caused by Chiari.

What type of testing has she had done? I would ask to have a full MRI scan done to determine what is going on. We do have a list of specialists here, but I have a feeling that South Africa isn't on it, but in case you decide to travel:

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

If you can't find anyone close to you with the name of a good Dr, then make sure you research as much as you can to find one that has experience with SM. I would recommend skipping right past a NL (Neurologist) and going directly to a NS (neurosurgeon). Most of us found we got little or no help with a NL.

As for management of symptoms, I get the tongue (bitterness, burning, tingling) thing sometimes really badly and I find chewing gum or sipping ice water with a little lemon juice in it really helps.
For swallowing, make sure that food is cut up small, have a drink on hand to help get it down and avoid any hard to swallow items that might get stuck (bread etc..). Has your mom ever had her gag reflex checked? That is one way to tell if there is cranial nerve damage there and really affects swallowing as you have no feeling at the back of your throat.

Your mom is so lucky to have a daughter like you who is out there advocating for her! I hope that you find a good Dr to help her!

Take care,
Carolyn

[Ebrahim]

Thank you for your response. My mom has had syringomelia since 1998 with a Chiari malformation and had a posterior decompression in 1998. the recent MRI done shows that that the right hypoglossal nerve is now affected and according to report the neuropathic symptoms around the mouth suggest a brain stem phenomnon which maybe an extension of syrinx into the brain. We are looking for some sort of relief for the burining senstation in the mouth and the heat buidup in the head.

Thanks
Ebrahim (Mr)

[selmaS]

Hi..I posted to this first question  in the neuro forum, but as to ur next question and concern I would suggest u look at a list of chiari drs to help decide what is going on.
Didn't the MRI show the syrinx?...wondering y it only suggests?

"selma"

[Ebrahim]

Hi Selma

The recent MRI compared to the previous looks the same. The syrinx is still present. From clinical evaluation my mom condition has progressed. The problem is to find ways of managing the burining sensation on the tongue and heat buid up on the head. Any advice world really help. One again thanks for the response.

Ebrahim.

[selmaS]

Hi...

Since I do not deal with the same issues ur mom is dealing with I can only suggest things, and not offer tried and true ideas that worked for me.....I am sure someone that is dealing with these issues may pop on and offer some help.

AS for the burning tongue...I can only suspect I would try to have ice chips available to help sooth it, not sure if it would work...as I am not sure how much burning and when it happens.

The burning head....Well I know I would most likely keep  my hair short to avoid a fuss to avoid agitating it.....I am not sure but anti inflammatory meds r suggested for this condition and I would suggest eating more foods with this property to help as well...we do have a list in the Health Pages regarding this topic...

Has ur mom had blood work done and ruled out a thyroid issue....Hashimoto's thyroiditis is quite common in chiarians and it can cause many issues such as what ur mom is dealing with as well....I am not saying it is something other than her syrinx, just that it could be in addition and if treated may lessen some of the issues for her,
http://www.medhelp.org/health_pages/list?cid=186

"selma"