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-   -   Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS? (https://www.neurotalk.org/movement-disorders/52250-spinal-myoclonus-palatal-myoclonus.html)

americaninberlin88 10-22-2012 08:19 AM

I too have Palatal Myoclonus
 
Hi! I also have palatal myoclonus. I had an MRI today and they found that my basal artery is curved and pushes on the nerve that controls my tongue, soft palate and throat. It is a birth defect and unfortunately, nothing can be done for it. Has anyone had any successful with medication to help the tremor? I have ear tubes and the noise is much louder than it used to be. I've had the clicking from the palatal myoclonus all my life, but just realized how bad it is when I had the tubes put in this past August. Any help would be great!

yohami 12-04-2012 11:32 PM

I sufferred a near fatal semi accident and lived two months with a broken neck before they discovered what was wrong. Afterwards, I eventually found I am sufferring from spinal myoclonus, and not PTSD like the two nerologist before were trying to say.

Long story short, I don't know what I am looking at and I am wondering how I am supposed to live with my new life. It is kinda scary, but it is still better than the paralysis I was sufferring with. So many questions are going through my mind and I would appreciate it if someone could guide me through what feels like misery.

earmom 01-02-2013 02:38 PM

palatal myoclonus
 
Quote:

Originally Posted by KJohnson (Post 537781)
My son has been diagnosed with palatal myoclonus. We are looking for someone to administer botox. We live in Ontario Canada - do you get botox injections? Who does this?

My son was diagnosed with Palatal Myoclonus in 2010. We have tried numerous drugs, ayruveda, acupuncture and now most recently surgical Botox. Our second attempt at the Botox, administered only on one side of his palate to reduce side effects, has stopped the clicks in one ear, but now he has very painful pops in that ear. I did read about someone else who had the same effects after Botox. He also still has pain regardless of the lack of clicking as well as vibrations in his throat. This was not the perfect solution although I have read that it has helped others. Based on my research there are only 2 pediatric ENTs who have performed Botox for this purpose. One is at Children's Hospital of Philadelphia and one at the Children's Hospital of Boston. Please contact me personally by email if you still need the names of these doctors. I do not have permission to post them on this site. I will say that this disorder has been debilitating and my son has missed most of this year of school. He lives in chronic pain from this disorder. I have promised him that I will NOT give up until we find a solution.

OxyDon 01-04-2013 05:14 AM

Turkey radiofreq?
 
Hi earmom,

Have you heard anything more on the radiofrequency procedure in Turkey you talked of?

I tried googling but found nothing. My partner suffers from palatal myoclonus and the ticking is around 100 per minute too. A couple fo times Botox didnt help. Acupuncture in the UK did help either.

Thanks

Quote:

Originally Posted by earmom (Post 943950)
My son was diagnosed with Palatal Myoclonus in 2010. We have tried numerous drugs, ayruveda, acupuncture and now most recently surgical Botox. Our second attempt at the Botox, administered only on one side of his palate to reduce side effects, has stopped the clicks in one ear, but now he has very painful pops in that ear. I did read about someone else who had the same effects after Botox. He also still has pain regardless of the lack of clicking as well as vibrations in his throat. This was not the perfect solution although I have read that it has helped others. Based on my research there are only 2 pediatric ENTs who have performed Botox for this purpose. One is at Children's Hospital of Philadelphia and one at the Children's Hospital of Boston. Please contact me personally by email if you still need the names of these doctors. I do not have permission to post them on this site. I will say that this disorder has been debilitating and my son has missed most of this year of school. He lives in chronic pain from this disorder. I have promised him that I will NOT give up until we find a solution.


earmom 01-04-2013 07:36 PM

palatal myoclonus & radio frequency ablation
 
Quote:

Originally Posted by OxyDon (Post 944383)
Hi earmom,

Have you heard anything more on the radiofrequency procedure in Turkey you talked of?

I tried googling but found nothing. My partner suffers from palatal myoclonus and the ticking is around 100 per minute too. A couple fo times Botox didnt help. Acupuncture in the UK did help either.

Thanks

My son also has over 100 clicks per minute in each ear. Acupuncture didn't help him either. Botox didn't provide relief from the pain, but the clicking did subside (but is not completely gone). He did get popping after the Botox and it is very painful.

I have the medical papers on the procedure done in Turkey. (Google Turkey and Palatal Myoclonus) The paper is titled, "Radiofrequency Ablation in the Treatment of Idiopathic Bilateral Myoclonus: A New Indication" by Omer Aydin, MD; Mete Iseri, MD; Murat Ozturk, MD. Any ENT should be able to pull the study for you if you can't access it on the internet. I will tell you that the process permanently fries the palate and based on the study our ENT said he would never try to follow it. He said that too much data was missing and there is no follow-up to that paper. My copy is very light but I am happy to scan it and email it to you if you provide your email address. It looks like it is from 2006.

Currently, we are going to meet with someone about trying CFR (Cranial Facial Reconstruction). It sounds crazy, and I have no idea where this will lead me, but I have already spoken to one person who has had it done and who got great relief from the pressure this disorder creates. Check out *edit link* I am not promoting it because we haven't tried it, but we are looking into it. And anyone with this disorder knows that you have to try everything you hear about. Keep in touch. Never loose hope!

earmom 01-04-2013 08:17 PM

Quote:

Originally Posted by earmom (Post 944585)
My son also has over 100 clicks per minute in each ear. Acupuncture didn't help him either. Botox didn't provide relief from the pain, but the clicking did subside (but is not completely gone). He did get popping after the Botox and it is very painful.

I have the medical papers on the procedure done in Turkey. (Google Turkey and Palatal Myoclonus) The paper is titled, "Radiofrequency Ablation in the Treatment of Idiopathic Bilateral Myoclonus: A New Indication" by Omer Aydin, MD; Mete Iseri, MD; Murat Ozturk, MD. Any ENT should be able to pull the study for you if you can't access it on the internet. I will tell you that the process permanently fries the palate and based on the study our ENT said he would never try to follow it. He said that too much data was missing and there is no follow-up to that paper. My copy is very light but I am happy to scan it and email it to you if you provide your email address. It looks like it is from 2006.

Currently, we are going to meet with someone about trying CFR (Cranial Facial Reconstruction). It sounds crazy, and I have no idea where this will lead me, but I have already spoken to one person who has had it done and who got great relief from the pressure this disorder creates. Check out *edit link* I am not promoting it because we haven't tried it, but we are looking into it. And anyone with this disorder knows that you have to try everything you hear about. Keep in touch. Never loose hope!

Oops...so sorry...correction FCR stands for functional cranial release NOT CFR mentioned earlier. My mistake.

MQuin 01-06-2013 05:41 PM

Spinal myoclonus
 
I was diagnosed with spinal myoclonus in September. I was in two car accidents a year ago, so I'm sure this is what caused the problem. I guess those of us who have this should feel special because from what I've heard it's a very rare movement disorder. I have made progress, but I live with involuntary movements. I move a lot when I feel sad for someone or when I laugh. I'm quite the entertainment for people. I am thankful to God that I am not paralyzed.

It was suggested to me by my primary care doctor to take bacopa and/or ashwagandha. Bacopa sort of helped at the beginning, but I haven't made any further progress. I am choosing to live my life without medication. Maybe those herbal remedies will help someone.

Jeanne Spangler 02-06-2013 02:44 AM

Hi, there is life after SSM. It won't be easy. I jerk, become dizzy and sometimes pass out. Thankgoodness, this isn't all the time. I have some good days as well as bad ones. The meds the doctor gave me made it worse so I decided to take nothing. I do drive some but not as much as I use to. I have other issues so it makes it seem worse than it really is. Lots of luck to you. This is the only site that seems to understand what we all are going through. Hang in there

Spiney95 02-08-2013 12:36 PM

wow!!!!
 
I just have well controlled rls and had no idea there were so many types of myclonus and how they manifest. I am so glad y'all are there for each other as I know you.must need peer support. Take care and have a good weekend.

Spine

pebblebeach2 02-10-2013 01:59 PM

Hi all. I happened to find this post and was wondering if anyone here can give me some insight.

First let me give you a run down on my history. It is rather long & complicated.

---- 1994 Lumbar surgery for herniated discs;
---- 1995 cervical surgery for foramenal stenosis;
---- 1997 lumbar surgery for "flatback" with Harrington rods;
---- 2000 cervical surgery for "kyphosis" with Harrington rods;
---- 2003 surgery left leg for DVT/blood clot;
---- 2006 Implant Spinal Cord Stimulator;
---- 2007 Pancreatic surgery;
---- 2011 Spinal Cord Stimulator removed;
---- 2013 Intrathecal Pain Pump Implanted

Other medical conditions:

---- Diabetic; Type II
---- Right Kidney disease
---- Congenital absent left Kidney

---- EMG done and conclusion was that I had severe nerve damage in the cervical & lumbar region; severe arthritis & peripheral neuropathy
---- MRI as per the latest on the cervical and thoracic; Mylomalacia - softening of the spinal cord; focal cord atrophy C4-6 levels; severe loss of disc height in cervical area; the Thoracic showed protrusions and mild disc bulges. I think there was mild stenosis but can't remember which levels. I do have the MRI report and have to check it out for further information.

Symptoms:

---- Peripheral Neuropathy of both legs. The left leg is more severe which included numbness in both legs; loss of balance issues; feelings at time that I am walking on pebbles [doctor felt that was related to diabetic issues] pins and needles feelings in toes; burning feeling in upper leg usually the right leg; issues with severe cramping of legs which is intermittent; always occurs at night time; excruciating pain from cramps
----- Intrathecal Pain pump was placed at T-10 level to help the mid-low back issues. It works fairly well in that while I may have pain at times it is on the mild side.
---- Due to neck issues of myelomalcia; focal cord atrophy I have symptoms going from weakness in the arms; weak feeling at times in the hands/fingers area; radiating pain into both shoulders. Centralized pain around the spinal cord; feeling of pressure in this area.

---- But here is what brought me to this particular posting. For probably a few weeks at this point I guess I started to have "involuntary movements." It tends to happen while I am lying down. I can be watching TV and all of a sudden its like there is a "jolt" to usually the upper arms/shoulder areas. I think I can probably say once in a while it was a severe movement that occurred while I was asleep and caused me to wake up. Once in a while I may beel it in other spots then the upper extremities. Sometimes the legs but mainly the arms/shoulders. Its like when a doctor does a knee-jerk test to the patella I at times get my arms will react like a knee would when the knee responds to the knee-jerk test.
If I am correct there are similar tests that are done to the biceps and triceps.
I normally wouldnt make an issue out of something. If it happened once or twice I probably would have thought it was strange but let it go if it stopped. But it seems to be an ongoing problem at this point in time. Not sure what to make of it.

Just another note on my history. In 1994 I developed tremors of the left arm. It would be severe tremors at times. So I saw a neurologist and after numerous office visits; EEG; EMG; MRI of the brain the conclusion was that I had Parkinson's disease based on examination and I guess test results ruled out other conditions. I did get a second opinion which said 75% that it was Parkinsons. I ended up on 3 anti Parkisnons medications of Sinemet; Eldypryl and Amantidine.
In 1997 I was having surgery on my lumbar area so my orthopedist had me see a neurolgoist for a consult prior to surgery. His opinion was that I did NOT have Parkisons. He thought it was Essential Tremor.
I ended up seeing a specialist in California that ruled out Parkinsons and Essential Tremor. He could NOT specify what the tremors were caused by. Whether any of this has any impact on what is occurring NOW I cant say.

Any comments/input on the involuntary movements? I see the term "myolconus" not sure if that is part of what is going on with me. It does seem that the involvuntary movements do occu while I am at REST rather when I am ACTIVe like typing.

Any input would be appreciated. Thanks for listening and sorry for such a long post but I had to include everything.


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