cranial osteopathy

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Today I had my first session of cranial osteopathy following a stroke, which left me with R. sided hemifacial spasm.

A few very tender points in my face and overwhelming fatigue both during treatment and following it. Have just had two hours sleep and feeling more human again. Hopefully it has loosened up some of the pressure points on the affected nerve where it goes over or through the facial bones. Will report more when I have some idea whether it has helped or not

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  • Posted

    Hi Jenny, my name is Bob from Hamilton,N.j.I had a hemi facial spasm condition for 3 years,4 months and 1 week before attempting a micro vascular decompression.This first attempt was unsuccessful ,so 3 1/2 months later I had another procedure at UPMC in Pittsburgh,Pa. and this time it was successful. I must admit that this is the first time that I have heard of a spasm induced by a stroke.I haven't the faintest idea as to how one would treat this condition,but I will do some research for you.In the meantime I  think that your best avenue of approach would be to check with your doctor for some names of some support groups .It would be informative for you to see how others in similar circumstances have dealt with the problem.What worked and what didn,t.I will add you to my prayer list and hope for the best. Good Luck.
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  • Posted

    Hi Jenny, It,s Bob again from New Jersey.The treatment protocols for your condition apparently include Botox,drug therapy which is successful in only 5% of the cases and finally MVD which which was mentioned with many warnings.One statement read this way-You are trading weakness for cessation of symptoms with respect to the Botox protocol.And since the possibility of a stroke exists as a result of MVD surgery, it would seem to me that you would have to seriously discuss possible negative outcomes with your neurosurgeon since you have already unfortunately experienced a stroke. Because of the risks involved ,there does not appear to be any clear cut easy answers.I don't know whether or not stem cell therapy would be a viable option for your condition,but my younger son is a very strong believer in this revolutionary therapy. He has given up on traditional medical practioneers and swears that he has gotten the desired results from his own stem cells.My wife recently had 2 back surgeries and in each instance as the operation was just about over,the neurosurgeon extracted a large number of stem cells centrifuged them and applied them to the wound site in order to hasten the recovery process. The neurosurgeon said that this type of therapy is the "new kid" on the block and this hospital was the first in this area to employ this form of treatment.One other well known doctor who espouses this treatment modality is Dr. Chris Calapai,,who by the way treated my younger son,who I mentioned earlier.If you have the time and are so inclined ,check him out on the internet.In the meantime,work closely with your doctor ,mention stem cell therapy to him and see what type of reaction it elicits.Once again Good Luck.Keep us posted.P.S. this Dr. Calapai has a live radio show on Radio Station WABC out of New York.He will talk to you if you succeed in getting through to him .He will answer your questions,tell you what he thinks is going on,what type of tests would be required to confirm his suspicions and finally what type of treatment regimen  he would devise for you.
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    • Posted

      Thanks again, Bob for all your trouble.

      Until this morning I was hopeful of the cranial steopathy sucess, but while shopping I felt the famiiar tighness and flicking, but this time it was in the baggy bit under my eye and not above and below the eye as usual.I was so disappointed, but my friend said it was not nearly so notceable as it usually is.

      It would not be so bad if it was the other eye as I could then see, but the good eye is the one twitching and closing and the other unaffected eye is a lazy one. Can you follow that? It means when the flicking and twitching starts I can't see anything until the lazy eye gets its act together and wakes up my brain. I was born with it and it was not discovered until I was 7, which was too late to correct it.

      I cannot get my point over to the neurologists and opthalmic people here at all and youngest son has now managed to get a referral for  me for consideration for Botox for July 13th , which will make it 10 months since my stroke.I could pay to go privately to see an opthalmic surgeon for Botox, but am not keen to use that option as I have no private medical insurance and a 95 year old husband with Alzheimer's, who needs constant care.

      Here in the UK the wheels grind very slowly and I doubt I would be even considered for any other therapy apart from grin and bear it!

      Meanwhile I carry on and physically am well recovered from the stroke apart from dreadful spelling and some  loss of words. I am not even sure the twitching occured because of the stroke or is quite independant of it as I did have some movement in my face under the eye back in August . I was told then it was stress and to take no notice!I went on following this advice until oldest son noticed slurred speech and a right facial droop and dialled 999. I will certainly look up your surgeon and am so pleased for your wife and son that they have been helped.

      Meantime I face another decision this week on whether a lump in my thyroid needs to come out because I used to work with radiation in the days when not much was known about protection. No wonder I am stressed! will keep you all posted on the outcome and thanks to everyone who has been so helpful and sympathetic on this forum.

      I am blessed with a lovely supportive family, who fight my corner when I can't any more.


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  • Posted

    Hi Jenny, Bob from New Jersey again .One trigger that used to stir up my spasms/twitches was LIGHT, no matter what type,no matter what intensity.I was a high school guidance counselor for many years ,and at one point was asked by the principal to assume the duties of the department chairperson.This promotion meant that I had to speak in front of large groups of people at assemblies,conferences,classrooms, faculty meetings etc. I told each group that I had a condition that afflicted 1 in a hundred thousand and for that reason I had to wear dark sunglasses all of the time ,both inside and out.The various groups were ok with it and I managed to not only survive but also to functionThe sunglasses really helped me. I was very confident and much more self assured and less self conscious. The sunglasses helped with the twitching and also covered up the condition.The outside world was unable to witness the personal hell that I was going through .If you haven"t already tried this coping mechanism,give it a shot and you might be pleasantly surprised.I didn't realize that you had such a long time interval before you could meet with a neurosurgeon.The sunglasses might help with the wait time.Once again take care and may God bless and protect you and your husbandP.S..My mother had the same condition(Alzheimer,s) for many years so I can fully empathize with you and fully understand how stressful your situation must be ! I know that you know that stress is and can be a very real trigger mechanism.Good Luck. Keep us posted.
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    • Posted

      Hi Bob,

      Jenny here again. Thought you might like to hear about latest  thing to happen and have a quiet laugh. I am trying to be happy, but it is a bit diffiucult as this morning the lump in my thyroid has to come out asap in another hospital where they can monitor me better for risk of stroke and bleeding! Apparently the lump is large, but no one knew about it until the carotid scan showed it lurking. I am wondering what next!

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