My toes are clenched up and my doctor had never seen anything like it. Anyone have any ideas?
Question posted by sara12345 on 28 Sep 2013
Last updated on 8 August 2020 by sara12345
Anyone had this problem or have any ideas to treat it? My inner 3 toes are clenched up 24/7. It hurts so badly that it makes it hard to sleep. It makes it difficult to walk. Also the clenching is so bad that my big toe constantly overlaps on top of the toe next to it. My leg is starting to hurt more as well, probably because of the strange walking and my whole leg is tensing up from the pain. It feels difficult to tolerate it.
Anyone know any remedies? My doctor didn't really know what to do, but sent me to physical therapy which the therapist wasn't sure she could fix it. The doctor also increased my Baclofen which is a muscle relaxant and gave me Lidoderm patches. Would a nerve block injection help it? It is on the same side as my stroke which was 5 years ago.
The toes have been bothering me for the past several weeks, but suddenly got really bad this week. No numbness or tingling. No, I have not injured my foot at all. So why does the doctor think I need x-rays? I've had way too much radiation. Thanks for any help.
I have found another remedy which is Cyto Cooling Relief cream. I just rub it on to the toes and it does help. Just go to Cyto CBD. The toe clenching is spasticity and CBD oil not only acts as a pain reliever, but treats spasticity also. So I also take Cyto Broad Spectrum oil which you put under your tongue. I had extreme spasticity on my arm. The pain was almost intolerable. What a huge difference with Cyto CBD oil.
Votes: +0
BU
Buggs333
8 Aug 2020
Hi, unfortunately this has effected for many, many years. I have been on antipsychotics since my 20's. I am now in my 50's. Gabapentin and benadryl is the only thing that has saved me, before, for many years I ended up with suicidal thoughts, I was at my wits in. Luckily from the other 2 meds, life is better for me. I do not know if this helped at all, yet it is part of my battle strategy
Votes: +0
TR
Trufflerussianblue
8 Aug 2020
Sara, yes since taking Baclofen, my big toe is moving towards my second toe on both feet, and looks like it will eventually climb on top of it. I feel a bit unsteady. I asked the doctor if Baclofen could be causing it and he said he had not heard that. Then I saw your message. I am going to wean off them. Sue
The other toes are clenching a little too. I got those soft plastic inserts for between the toes. Helps
If Baclofen is a muscle relaxant it makes sense to me that maybe it is relaxing the muscles in feet too much.
Votes: +0
TA
TaMom
5 July 2020
I have the same issue. I read online that toe spacers help. Found on Amazon. It’s helping my toes. Good luck! I hope this helps.
Votes: +0
SA
sara12345
3 Nov 2018
Hello everyone, Flexeril! I don't see a way to update this under my question. But for anyone who suffers from this, Botox helped it until I couldn't have it anymore. Then I was in the hospital for another problem. It was the week from hell--far worse than when I was in the hospital with a major stroke. But the medication that helped that problem helped my toes. It was Flexeril or the generic is cyclobenzaprine. I have been taking it ever since. My problem was in just one foot and was caused by my stroke.
(You should know that the Botox injection was painful, but for a very brief time. In the bottom center of my foot, the doctor first electrically stimulated the nerve to make sure that he had found the right spot, then he injects the Botox. I have no problem with needles--getting about 15 of them every 4 weeks, but this is horrendous.) It was worth it because my toe clenching was far worse.
Hope that this information might help someone.
Votes: +0
SM
Smalltown37
21 Dec 2013
Hi I'm new on this site saw your post & it sounds just like me! I have chronic severe Dystonia in my lower body form waist to toes. Toes curl spasms cramps all very bad. My tests all showed up fine too. Only a Nero tht has worked with this before will know what t is. I now have a baclophen pump and its calmed down quite a bit. I've also had X-rays show up fine too. NO it's not fun and I have had storms that sent me to ER 2 times before the pump. When the Dystonia is bad I can't walk at all. I do hope you get it figured out and soon!
Votes: +1
SA
sara12345
22 Dec 2013
Hi Smalltown, I'm so sorry to hear about your pain. Have you tried Botox injections? That is what helped me. My neurologist said that he had another patient last month who had Parkinson's that was helped by the Botox for his toes. My problem is caused by a stroke. So it would seem like you could be helped by Botox. I told my neurologist that my severe migraines were easier to bear than my toes clenching to get to sleep. (I also get Botox for my migraines.) And I too had every blood test known to science plus an x-ray that all showed normal. My neurologist said no need to get a bone scan which my podiatrist recommended. Please look into the Botox. Find a neurologist who does give Botox injections and inquire about it. Good luck to you.
SM
Smalltown37
22 Dec 2013
Botox is not an option for me. Too many shots would be needed and unfortunately needles bring on my Dystonia. It's considered chronic & severe. & I have a lot of reactions to meds so my only option was this baclophen pump. We just have to get the dose set right. Tried a block for the migraine and had extreme severe migraines from that too. I'm a difficult case so I'm told. :-(. But after over 6 years I'm very slowly getting some relief!
SM
Smalltown37
22 Dec 2013
Oh forgot to say. Dystonia is a symptom of a lot of different health issues including a stroke. That's why my drs are NOT ruling anything out yet & this pump is NOT to be taken as an easy desion to do.
SA
sara12345
23 Dec 2013
So sorry to hear that injections are out for you. Your pain is definitely bad. I wish you the best. Sara
As soon as I started using Baclofen I got severe cramps in my calves and toes at night, as well as insomnia. (My toes curled down and were very painful.) Went away when I didn't take the Baclofen. It's supposed to have the opposite effect from this! The doctor never suspected this reaction.
Votes: +0
SA
sara12345
6 Dec 2013
Thank you so much for your response, except it probably isn't something that I can go off. Wow, I've been taking Baclofen since April for severe mouth pain--10 out of 10. It was the very last medication that would work on it without causing far more severe side effects.
My clenched toes started the middle of September, but then side effects can be delayed--I think. I'm hoping that the next Botox injections on it will work even better next time. It worked for awhile, but then the clenching has come back. It was thought that it was spasticity caused by a major stroke that I had. We'll see. Thanks again.
MA
MacIntosh12
6 Nov 2013
Sara! This has started with me, too! My toes cramp up so badly, yet mostly at night. Do you notice that if you go to a higher heal or a different shoe the cramps get way WORSE? Mine do. I don't know if this is a vitamin deficiency or what, but it certainly does keep one from sleeping! I keep awakening at about 3am with these cramps in my feet/toes, ugh, I'm an idiot from lack of sleep!!
Have you had blood work recently? You might want to ask your doc to do that, see if it's vit related. You're not alone, Sara, I'm right here, having toe contortions and cramps that wake me from a dead sleep! Love, Lara
Votes: +1
KA
kathyhanson
6 Nov 2013
Lara and Sara, Aren't those foot/toe cramps the worst!!! OMGosh and they always hit in the middle of the night. Thank God I don't get them often, but sometimes I wish I had a camera rolling when I awaken with a cramp/spasm and really NEED to jump out of bed quickly to walk off the spasm. For some of us, there is no such thing as "jumping out of bed". I usually get my legs twisted in the covers and end up hanging off the bed head first! I really feel for you guys. I couldn't handle those cramps every day. I would probably end up seriously hurting myself! hehe! I'm clutsy and trip over the roses in the rug! Your seriously clumsy friend! Kath
SA
sara12345
7 Nov 2013
I am so sorry for both of you. You guys don't need anything more to deal with. And you're so funny Kathy with your description of what happens when you get the spasms.
It turned out that it was spasticity from my stroke because the Botox injections (one in the bottom of my foot--YIKES) did greatly improve the 24/7 clenching. The doctor said he would give me more next time if I needed it, which I will ask for more. But what an improvement! It was driving me crazy. I could hardly walk because my big toe landed on top of the toes next to it because they were clenched up so much.
And to your suggestion, Lara, between my primary care doctor and my neurologist, they ordered about 35 different blood tests. It was unreal. They even tested many heavy metals in my blood. Everything came out ok. So no deficits there. I really hope that your foot spasms will get better.
SU
subzero58
5 Nov 2013
hi Sara,try putting a bar of soap between your feet or under your sheets. it sounds crazy but it works... pete
Votes: +0
SA
sara12345
6 Nov 2013
What are you talking about?
GA
Gary622012
6 Nov 2013
This is an old fashioned type thing that people have done for years. Some it really does help by putting a bar of soap in your bed near your feet between the sheets. It didn't help me however, but it has many people for foot, & leg cramps. this was done before modern medicine, & as Pete says it can help some people.
SU
subzero58
6 Nov 2013
Sara,put a bar of ivory soap between your sheets,open it first. just give it a try. and drink plenty of water. low potasiumn(sp) could be another reason.
SA
sara12345
6 Nov 2013
Thanks for your tip. It turned out to be spasticity from my stroke and was improved with Botox injections. I appreciated your effort with the tip. You take care.
GA
Gary622012
8 Nov 2013
Am so glad your toe cramps are so much better. See, what works for one doesn't necessarily work for another, but anything is worth a try when you have this problem! To Pete: GREAT IDEA! I know it has helped a lot of people. Your old friend Mary(of the many numbers)
Hello sara... I was wondering if Parkinson's disease had been ruled out??? Clenching is a common factor and botox injections can help. I hope you get more answers along your journey than questions...
Blessings to you for peace and healing that brings you needed relief from suffering...
Mary
Votes: +1
SA
sara12345
16 Oct 2013
Mary, Thanks for your sweet note. I don't have any of the symptoms or warning signs of Parkinson's. I also had an MRI and MRA recently which did not show anything like Parkinson's. In fact many people have commented how much better I seem, brighter, my speech is better. I think those are all signs of my other stroke effects getting better. Over 3 years after my stroke, nearly 2 years ago, I suddenly lost my voice and had difficulty swallowing. I saw a specialist ENT doctor who anesthetized and scoped down my throat. His firm diagnosis was that it was from my stroke. He said that he frequently saw these effects years after people's strokes. Sure enough, just getting speech therapy, I was able to fix both problems. Most likely it is from my stroke as my 2 neurologists and primary care physician think. But thanks for your concern. Sara
HE
HeadStarter
16 Oct 2013
You are welcome... I am glad you are getting better because any stroke is scary and a frightening thing to wrap your mind around. May the rest of your journey be bright and enlightening...
Mary
GA
Gary622012
15 Oct 2013
Hi Sara, I just had to pop in & give you my take on this also, We are 'old' friends, (Mary) & also have some news for you about your bones. I have friended you, & hope you will do the same so I can tell you about a site I found which involves NO biophosphates for you! As far as the muscle type cramps with your toes, Karen gave you great info, but also vit. C & magnesium will help also with this problem. I take 1000 mg of vit. C & 500 of magnesium. I would wake up during the night every night with the same problem, but once I got on the right vitamin supplements it stopped. If I forget to take it daily, I get them again. Nothing like a great, uninterrupted night of sleep! Don't forget to friend me on this name. Take care... M
Votes: +1
SA
sara12345
16 Oct 2013
Thanks Gary. I will look forward to your info on the bones. I did friend you. I have been taking the magnesium supplement daily for years to treat my severe migraines. Both my 2 neurologists and my primary care physician all think that it is from my stroke. I have had other post stroke problems occur years later as I described to your friend Mary below. I am very overloaded with vitamins, an herbal remedy and a ton of medications. Even the vitamins are suspect for interaction problems. So if the Botox works, I think that will tell the story of it being "spasticity" from my stroke. But thanks for your thoughts and recommendations. I do appreciate them. Sara
GA
Gary622012
6 Nov 2013
Sara my friend, I do hope you got the botox already & it is helping. I also wanted to let you know I did complete my Forteo 26 month program, no reactions at all, & now I am considered osteopenia, NOT severe osteoporosis! Yeah! No one compression or any (ribs etc) breaks in over 2 years going on 3! I would still consider the injections if it were me. If you decide on it, just be sure to get dental x-rays often. maybe yearly. The site I referred you to wants some money for part of their program, but if you signed up, you don't have to pay, & will get lots of free info from it for your osteoporosis. M
SA
sara12345
7 Nov 2013
Hi Gary, I did get the Botox which greatly helped my toes. It was from spasticity from my stroke--over 5 years later. More surprises after my stroke years later. And thanks for your bone info. I'm am so glad that you had such great success from your injections. I did not see any website info from you. If you sent me a PQ, I didn't receive it.
But no worries. After suffering from severe bone pain and skin pain for over a year after a Prolia injection for my osteoporosis, I am not taking any more bone medications. I cannot wear my CPAP mask which means I get terrible sleep and are risking a far worse 2nd stroke. I suffer daily with the bone pain to sit on the softest chairs. I believe that ALL of the bone meds have the potential of pain syndromes, except the Prolia was new on the market and didn't have the track record set. For whatever reason that I am reacting, I am not chancing it again. I have other major pain problems already. But I do appreciate your great story.
GA
Gary622012
8 Nov 2013
That's so bad to hear about the prolia! I will try to get a message somehow about that site to you. will have to look it up. did send you a PQ, but the powers to be, must not have let it go through. So very sorry. will be back with that info somehow.
GA
Gary622012
8 Nov 2013
I forgot! Glad the botox is helping you too! that is great news!!! :)
An update to you all. My best bet is to get Botox injections in these toes. All the doctors think it is most likely a post-stroke response. Yes, it's been 5 years, but you're never out of the woods with new problems arising from strokes, as I've been finding out. It has to be done on the exact same day as my migraine Botox injections. And that's next week. How very fortunate for me.
Between my neurologist and my pcp doctor, I got about 30 blood tests with about 6 vials of blood. Not just the calcium, potassium, all the vitamins, but my kidneys, TSH, heavy metals and stuff I've never heard of. All came back normal, except of course for my kidney failure. The x-rays of my foot also came back normal.
Also my neurologist recommended a paraffin bath, like a hot wax to put on my toes to try to loosen them up. Also both my neurologist and pcp sent me to a podiatrist who I can't get in to see until mid-November. The PT hasn't helped at all and in fact I think makes it worse.
Thanks again to you all. I did greatly appreciate all of your helpful comments.
Votes: +2
KA
kathyhanson
8 Oct 2013
Sweet Sara, I'll be praying that the Botox works next week. If it works, you'l be out kicking your heels up dancing, right? LOL Hey, if it works that well, I'll be the first to sign up for full body Botox!! hehe! Love and hugs, Kathy
SA
sara12345
8 Oct 2013
Thanks for your sweet comment and humor. And again, so sorry for your and your daughter's recent loss. It will take time to heal. My prayers continue to be there for you.
KA
kathyhanson
9 Oct 2013
Thank you Sara. You're a sweetheart!
BR
braydensnana
9 Oct 2013
Good luck. I get botox for my headaches and it is a blessing. I still have headaches but not 24/7 that I had for 19 years. I think it will work!!!
SA
sara12345
9 Oct 2013
To braydensnana, Yes, the Botox has kept me from having severe migraines 24/7 along with nerve block and trigger point injections every 4 weeks. How often do you get your Botox injections? I need them every 10 weeks! I bet you get them every 3 months. But my migraines were caused by my stroke. So glad that you are getting relief.
BR
braydensnana
9 Oct 2013
I had a brain aneurysm then a stroke too in 1994 been having the headaches from then to present-they never leave . I just started getting the injections last Dec every 4 months and I too get the injections in the back from the top of my head down the neck. He gives me double the dose. We are the same age. Anyway I think the botox will work for your toes. Just hope you can walk!!! Praying for you Sara. Much luck. Keep us posted. Peggy
SA
sara12345
10 Oct 2013
Peggy, How very interesting that your migraines were also caused by a stroke. I get about 275 units which is a lot more than the 100 units that the Botox doctor started with. So I may be getting more than you get. My headaches are mild most days, but I still have severe ones sometimes. The last one was severe with vomiting for 60 hours straight. Even getting extra drugs at the ER couldn't touch it. And I need at least 12 hours of sleep a night and can't do much in a day, or my migraines get bad. But I'm now at peace with my condition. How are you doing with your situation? Any other disabilities from your stroke? At least you had yours when you were far younger which probably helped you. My stroke came when I was 56 years, but even that was on the young side. Really good to hear from you. Thanks so much. Sara
BR
braydensnana
10 Oct 2013
I get 32 injections at double the amount that he gave me the first time .I forgot what he said. Yes I was 42 when I had my aneurysm. I worked really hard to get things back. I was in hospital 2 weeks and given bed rest or 2 months to rest the brain (my aneurysm was between my hemispheres-communicating artery). I walked about 5 miles 5 times a week with a friend (started with 1 mile). I have no memory of most of it. I still have memory problems and incontence- 3 kinds.brain kind is bad as your brain tells your bladder it is full it just goes with no notice. I learned to play bridge again which really helped me. This last year has been the hardest on me with memory. But considering I lived most people would never guess I had all this except the holes in my head and can't MRI because of clip. Hope I never have another stroke as you are right I was younger. Keeping you in my prayers.
SA
sara12345
10 Oct 2013
Peggy, If your aneurysm burst, then you are very fortunate to be alive. I also have a brain aneurysm which is about 3 mm, so they don't think it is worth the risk of brain surgery. But I could die any moment from it bursting.
Also you're very fortunate that you were able to exercise after your stroke. Five years later, I still can't exert physically, or my migraines, caused by my stroke, get terrible. Being able to exercise is a big plus for you.
And you're right, let's hope neither of us have another stroke, because our brains are already compensating from our damaged brains. A second stroke has far worse rehabilitation. But that shouldn't happen to either of us.
I will also keep you in my prayers. You take care. Sara
BR
braydensnana
14 Oct 2013
Hi Sara I looked up my scan before I had the aneurysm clip the size was 1.2 x 1 x 0.9 cm it was where the anterior cerebral artery divides into the two terminal branches the callosomarginal and pericallosal trunk. I have an old roommate that had brain aneurysm last year and they fixed it by stent from groin. I have no knowledge of which aneurysms they can do that too. Have you checked into that? Just a thought. Thinking of you. Peggy
SA
sara12345
15 Oct 2013
Hi Peggy, Keep in mind that mm are 10 times smaller than cm. So yours was a lot bigger than mine. The neurosurgeon told me that he could go up through the groin which is less risky, but doesn't last as well as going through the skull. It sounds like your aneurysm did not burst, but that you decided to have it operated on--or am I wrong? When they burst, most of the time people die from it, but not always. Thanks for the added info. Sara
BR
braydensnana
15 Oct 2013
I found mine by going Dr to Dr telling them I had vibrations in my head. My blood pressure was going very high and in15 mins very low. Most of them thought I should be on a antidress. and then want to send me somewhere else (nutty Dr) I spent 8 months looking- my GYN said to keep going she was the ONLY person that believed something was wrong-without her I would be dead. When the headaches started I (never had them before) I was sent for my eyes, etc. I finally grabbed the Drs white coat and that's how I got a scan! My neurosurgeon ordered an angiogram to see if I had more and then had to do emergency one the next day as it was larger than the size I gave you. Lucky I had a Dr here that could go in that part of the brain. A year later I saw a show with someone that had same kind and they said only 200 Dr in the world could do the surgery. I'm sure things have changed now. How they got to mine was they cut ear to ear and peeled face down, drained all my blood too.
Glad I didn't know any of this before hand. I was out of it for months but had the worse headache for months and still have them. Can't seem to find a Dr that wants to find out why. My nuero told me before surgery they were not caused by the aneurysm-he was right still have them. I really believe something to do with nerves in brain. Sorry for the long story. I could never go through this again. In fact, I was supposed to have CT every 3 years but I stopped from 1999 until I just had one last month. I still think I would try the stent and then it would take the relief off of your feeling like it might be your last day. But that's up to you and the DR.
SA
sara12345
16 Oct 2013
What a nightmare that your many doctors didn't do what they should have done to diagnose you properly! Maybe things are somewhat better today. There are two neurosurgeons that I easily found within a 50 mile distance of each other that are both able to do the procedure through the groin, the clipping.
The one thing that I would recommend to you is to NOT have a CT scan to monitor your aneurysm. CT scans give you a huge amount of radiation and also the number of them that I had led to my kidney failure. But I would encourage you to instead get MRI and or MRA to monitor them. That's what I get every 2 years to monitor it, but it has stayed the same for the last 5 years.
It may seem odd to you, but I don't worry about my aneurysm bursting, since the percentage chance of it bursting is 0.05%. And there are risks to even the clipping method that I don't welcome. I have had so much to worry about medically on a daily basis that this has been last on my list. The big thing is to not let your blood pressure to go over 150 with the top number.
The first neurosurgeon that I saw said that I needed to have the full skull surgery ASAP and not to do anything that would raise my breathing or blood pressure. I got 2 other neurosurgeons and an unbiased neurologist from the Cleveland Clinic who all said NOT to have the surgery, especially so soon after a major stroke when my brain was trying to reconfigure. The neurosurgeon that I chose told me that if and when it got bigger, he preferred the clipping method and that I could do anything that I wanted to do except not to jump out of plane without a parachute and not to play football without a helmet. What a difference from the first neurosurgeon who I found out later had just completed his residency the year before and I saw him in January! Just trying to build up his history.
But thanks for your concern about me. I am so sorry to hear that your procedure led to your long history of migraines, but thank goodness that you have found the Botox.
Dear Sara, I have never had the cramping in my feet but I do have feet going numb. Occasionally I do have my facial muscles cramping up (not very pretty ). I'm curious how many of you out there have either been dianosed with MS or have symptoms of MS. When I was told I had it and was prescribed Gabapentin my symptoms (even my BMS) seemed to get a lot better. I've been to so many doctors for the BMS that I discovered how to weed out the bad ones pretty quick. You have my prayers going out to you and let us know how it goes.
Votes: +1
SA
sara12345
29 Sep 2013
Sorry to hear about your problems, although I don't know what BMS is. What is BMS? I just had an MRI recently which indicated that I do not have MS which could have been a possibility with my intense pain in my teeth, gums, and elsewhere. That's in addition to my severe migraines and fibromyalgia. Thank you for your kindness for your prayers and I will also pray for you. Sara
SU
Suzanne mc
1 Oct 2013
Dear Sara, What is BMS? I can only tell you about my version. It started in the back of my tongue and and the roof of mouth. Very intense pain. Then it went to all of my tongue and around my back top molars. Next in line was from roof of mouth up my face to my eye. Finally it went down my neck into my chest. Oh I should have mentioned all of this was on the right side. I described the mouth pain as eating very hot jelopenos for hours straight. There is hope. Having suffered for around 10 years I finally found some help after seeing 12 to14 doctors. Good luck and feel free to ask any questions. Don"t know if we have same problem but pain is pain no matter where it is.
SU
Suzanne mc
1 Oct 2013
Dear Sara, What is BMS? I can only tell you about my version. It started in the back of my tongue and and the roof of mouth. Very intense pain. Then it went to all of my tongue and around my back top molars. Next in line was from roof of mouth up my face to my eye. Finally it went down my neck into my chest. Oh I should have mentioned all of this was on the right side. I described the mouth pain as eating very hot jelopenos for hours straight. There is hope. Having suffered for around 10 years I finally found some help after seeing 12 to14 doctors. Good luck and feel free to ask any questions. Don"t know if we have same problem but pain is pain no matter where it is.
SA
sara12345
1 Oct 2013
I now know that it is Burning Mouth Syndrome which I should have remembered from discussions about my intense mouth pain which was thought to be Trigeminal Neuralgia, but now the surgeon says that it is something else. I cannot take Gabapentin, but am taking Baclofen which has helped some. Was there any other solution that helped your BMS? It might help my pain. If it was just the Gabapentin, I can't BELIEVE that it took so many doctors to prescribe it!!!
SU
Suzanne mc
2 Oct 2013
Dear Sara and everyone else, I was not surprised to hear that you went to many doctors in the beginning that had no idea what BMS was. I imagine a lot of people in this group had same experiences. There is a mouth wash that I called magic juice that has to be mixed by the pharmacist . It deadens anything it touches for about an hour. It's been a long time since I used it but will call and find out the mixing formula and let you know tomorrow. You will have to have your doctor prescribe it. My road to almost a normal life began when I found a pain doctor that refused to quit on me. I do feel like I was his guinea pig in his little shop of horrors!!! After about 11/2 years he brought in another doctor who did know about this condition and she told me that surgery was the only thing that would help. By then I would have tried anything! Problem was finding a doctor in Dallas area that had performed this surgery.
Finally they found a nerosurgen and after a lot of tests he thought he could help me. He took a piece off my skull off to get to the glossopharneal and vagus nerves that originate from the brain stem. He severed the gloss nerve and a portion of the vagus. Very serious surgery not to be done unless you know that is the problem. It took away about 80% of pain and I considered that a huge success. I had some side effects that took some time for me to recover from. Now the only medicine I take is a baby dose of gabapentin and 150 mg a day of amitripiline. I'm still on this site with the hope I can help someone else and provide others with the belief there is a light at the end of tunnel.
SA
sara12345
2 Oct 2013
Wow, thanks for all the information. I do really appreciate it. Do you know the name for the surgery, even though you did give a very good description of it? It might help me locate the proper neurosurgeon more easily and also look it up on the internet. Also could you also tell me what your side effects were from the surgery? It sounds like the side effects could have been far more severe. I will look forward to the mixing formula. Thanks so much again.
SU
Suzanne mc
2 Oct 2013
Sara it's called MVD ( microvascular decompression). Before he would do the surgery he gave me a really weird test. They prepared me as is I was going to surgery and then I found out I was!! I had to be awake while they inserted long needles into behind my ear (they had me on some kind of video that was showing where the needles were going). Anyway they started injecting different places and asking me if I felt anything. Finally after forever the pain like a bolt disappeared!!! I They knew that was it and surgery was needed. The surgeon was VERY serious when he explained the surgery. Side effects ranged speech problems to strokes to death. I had 2 not so bad side effect. I lost the hearing in my right ear but it started coming back after 3 months. The worst was losing the ability to swallow anything except thin liquids. They brought in a speech therapist to help me retrain my tongue and it took a long time and lots of practice but finally advanced to cream soup.
That was a proud moment!!! LOL. Yes I finally can eat normally now. Even if I had never been able to eat again it was all worth it.
SU
Suzanne mc
3 Oct 2013
Dear Sara and anyone else out there that need quick mouth pain relief. It's been 2 1/2 year years since I've used this but it helped a lot. My pharmacist only had records for 2 years and my doctor,s office didn,t have the mixing amounts but here are the ingrediances. Lidocain and diphenhis. Maybe your doctor will be able to figure out the amounts. It was pink so they must have put something in it to make it more pleasant to take.
SA
sara12345
3 Oct 2013
Suzanne, Thanks for all the information. What a good person you are to share it all. And how were you able to get enough protein and nutrition only being able to drink thin liquids? You must have starved. Thanks again. Sara
SU
Suzanne mc
4 Oct 2013
Sara you are so nice to relate that to me. I wish sites like this one was available when I came down with this. No doctor or dentist knew about it and they made me think I was crazy. I had one very respected neurologist that wanted to refer me to a shrink!!! As far as how did I survive on thin liquids it really wasn't that hard. Beef and chicken broth got very boring but after about 6 weeks I discovered Atkins protien drinks and they were so good I still drink them for breakfast. But remember I had just finished surgery and I could have lived on broth forever since my intense pain was gone. You will stay in my thoughts and let me know if that mouth rinse helps. God Bless.
OH Sara! How painful!! I've had spasms in my toes like this, but they go away after a little while. I must agree with the others, blood work! See if you are deficient in something? I hope that's all it is. Love, Lara
Votes: +1
SA
sara12345
29 Sep 2013
Thanks for your kind response. It seems from some of the answers that it could be foot deformity caused by a disease or need surgery--YIKES. We'll see.
MA
MacIntosh12
29 Sep 2013
I pray that's not so, Sara!
KA
kaismama
28 Sep 2013
You need to see a podiatrist. You could have joint damage that is causing the toes to shift. I've got the that. Only a podiatrist will be able to tell you if its that or something muscular and he can treat whatever it is.
Votes: +5
SA
sara12345
29 Sep 2013
Thanks for the tip. The doctor thought of a podiatrist, but instead sent me to an orthopedic doctor which will be a while to see a physician's assistant.
