Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
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Hello, Healer, Idon't know what the percentages would be, but I would definitely ask your neurosurgeon about it. Who knows, if you're having Chiari Repair Surgery perhaps it could be done at that time, if necessary.
I also have a Tethered Spinal Cord, Syringomyelia (SM) but, as far as I know at age 73, no Ehler -Danlos.
There is a society called ASAP which will help guide you with diagnostic information and, if necessary, a list of neurosurgeons who can handle the specialty you require. I used to be a part of it in its very earliest years, it was founded by a woman in the small town of Longview, Texas...Barbara White....and to my knowledge was the very first organization in the U.S. to help people (it was done by phone then). Today it's an organization that's worldwide and in every state. You may even find a support group in the state in which you live.
Have you had any past accidents or surgeries? Ehler-Danlos can cause numerous problems, as can SM, ACM and even Tethered Cord. I'm hoping to get by with the use of a good osteopath before I need surgery again. Hoping....ever hopeful. Good luck, and if I can be of further help, please ask. Yours, Lenora
I also have a Tethered Spinal Cord, Syringomyelia (SM) but, as far as I know at age 73, no Ehler -Danlos.
There is a society called ASAP which will help guide you with diagnostic information and, if necessary, a list of neurosurgeons who can handle the specialty you require. I used to be a part of it in its very earliest years, it was founded by a woman in the small town of Longview, Texas...Barbara White....and to my knowledge was the very first organization in the U.S. to help people (it was done by phone then). Today it's an organization that's worldwide and in every state. You may even find a support group in the state in which you live.
Have you had any past accidents or surgeries? Ehler-Danlos can cause numerous problems, as can SM, ACM and even Tethered Cord. I'm hoping to get by with the use of a good osteopath before I need surgery again. Hoping....ever hopeful. Good luck, and if I can be of further help, please ask. Yours, Lenora
Thank you, Lenora. I will check out ASAP. I started with the tethered spinal cord release, and have not had the Chiari decompression yet. I have POTS, but have now developed some new issues with my heart rate dropping a lot with head/neck position. TCS and SM are certainly significant health issues. I am hoping for the best for you!
Hi, Healer. How was the surgery for the cord? I should have it, I know it, but I really have a lot that I'm dealing with at the moment.
Hmm...interesting about your heart rate. Do you have BP problems, too? I used to run exceptionally low all day, now I'm high in the late afternoon & evening (really high), but again very low in the a.m. The Dr.'s are frustrated that they can't even it out, but I have a feeling it's more tied into the brainstem surgery. I've had a good run with surgical care, but things have improved....but I would definitely bring it up with your surgeon beforehand, as well as a good set of pictures done before any surgery is undertaken. Like i said before, if that's also required, perhaps it could be done at the same time.
FYI: While the first week after surgery was a bit strange, it was a whole lot easier than my cord surgery. It's not done any longer, at least in the same manner, and the brainstem surgery was light years easier on the body. Also, once healing set in things soon took off and I did a great job of recovering from that surgery. Expect some discomfort, even pain, but meds will be available for you to use.
I'll tell you that at that time I had plenty of time to get my body back in peak condition (or as close as it was going to get under the circumstances). Good eating was PARAMOUNT, (not yelling) and there was a marked difference between the first two surgeries. I was walking immediately, and did everything I could to recover my strength as soon as possible. My youngest daughter was going off to college and she worried horribly about me. I didn't want her to see me as some helpless little thing who couldn't do anything for herself. She was a bit mentally fragile herself at the time. Now I am a tired bag of bones!! (Which it seems are getting more and more well covered each day. I have to get eating under control. I was too thin before, now I'm heading the opposite way...or at least I feel that I am. Certain meds make you feel that way. Ugh!).
I do wish you well and hope you'll keep me posted. Yours, Lenora.
Hmm...interesting about your heart rate. Do you have BP problems, too? I used to run exceptionally low all day, now I'm high in the late afternoon & evening (really high), but again very low in the a.m. The Dr.'s are frustrated that they can't even it out, but I have a feeling it's more tied into the brainstem surgery. I've had a good run with surgical care, but things have improved....but I would definitely bring it up with your surgeon beforehand, as well as a good set of pictures done before any surgery is undertaken. Like i said before, if that's also required, perhaps it could be done at the same time.
FYI: While the first week after surgery was a bit strange, it was a whole lot easier than my cord surgery. It's not done any longer, at least in the same manner, and the brainstem surgery was light years easier on the body. Also, once healing set in things soon took off and I did a great job of recovering from that surgery. Expect some discomfort, even pain, but meds will be available for you to use.
I'll tell you that at that time I had plenty of time to get my body back in peak condition (or as close as it was going to get under the circumstances). Good eating was PARAMOUNT, (not yelling) and there was a marked difference between the first two surgeries. I was walking immediately, and did everything I could to recover my strength as soon as possible. My youngest daughter was going off to college and she worried horribly about me. I didn't want her to see me as some helpless little thing who couldn't do anything for herself. She was a bit mentally fragile herself at the time. Now I am a tired bag of bones!! (Which it seems are getting more and more well covered each day. I have to get eating under control. I was too thin before, now I'm heading the opposite way...or at least I feel that I am. Certain meds make you feel that way. Ugh!).
I do wish you well and hope you'll keep me posted. Yours, Lenora.
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Yes, and another that goes along with Arnold-Chiari Malformation is Syringomyelia (SM). Cysts form inside the spinal CORD and cause upper body pain that can be quite bad. It's considered one of the neural tube defects, meaning that folic acid during pregnancy would prevent the entire problem. That's if you have both ACM & SM. Now if SM is caused b/c of an accident, things are a big more complicated. There is no Arnold-Chiari Malformation, thus a repair can't be done via the brainstem. To be honest, even though I have two of the more serious conditions, plus additional neurological and heart problems, I don't know where the latest surgical techniques stand. I may have to have surgery because of Tethered Cord Syndrome.....but I'm not rushing into anything, I have enough to contend with at the moment.
To summarize - please keep your mind open about Syringomyelia. Tests can be performed to see if you have it at the same time as your Chiari tests. I had surgery on my SM in the '70's, and I have considerable pain from a combo of factors, not the least being the surgery. Today SM can generally be repaired via the brainstem at the same time as the Chiari Repair Surgery. It's so much easier and less painful to do it that way.
After Effects: It has been a long time since I had surgery for my SM and ACM. I've suffered with exhaustion, severe chronic fatigue and, of course, ongoing pain and lack of muscles due to pulling on the cord. I'll help you all that I'm able to today. We have an excellent Researcher in our corner, Dr. Ron Davis, plus others who are being paid by the federal govt. to come up with a cause and treatment for the condition.
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The tethered cord surgery was a significant surgery, but I knew I needed it, and I was very glad that I did and should not be sustaining further loss of function. Recovery was more difficult for me due to connective tissue problems, which can sometimes cause stitches to pull through the skin and wounds to reopen. I haven't kept track of blood pressure as much... usually they say I have normal or low blood pressure, but sometimes it's been high. I know these things are a lot to deal with, and the prospect of more surgeries can be daunting.
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so much more is known about SM, ACM and Tethered Cord Syndrome than even 10 yrs. ago. Please bear in mind that both conditions combined can give neck pain, burning pain distributed in a cape-like effect across the back into the arms and chest. I awakened from my first surgery thinking I'd had a mastectomy....the pain under my arm and in my l. breast especially was horrible. I still have all of that today. Burning pain is definitely a sign of neuropathy and is one of the most difficult types to treat. Please just bear in mind that if you're going to have Arnold-Chiari Malformation checked, you should also ask for an MRI of the back itself to rule out Syringomyelia. You'll need one with and without contrast. Yours, Lenora.
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Jwarrior77
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Do you know if Syringomyelias can show up on MRIs without contrast or is it just more likely for it to show up on one with contrast?
Hi, Jwarrior77, I would definitely have it done with contrast. If you have an allergy, make it known to the Dr. a long time ahead. If not, and it's anxiety, something can be done about that to enable you to easily get through the test. And have your neurologist read the picture itself...not just the report. Yours, Lenora
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I am a beginner in imagery but even i can see that there is defo something wrong and yes sounds like what you said. Suggest you go to a forum who can tell you more and get expert neurosurgeon that they on forum might be able to suggest
Hi wishing well....I can't see the MRI, but if you are doubtful please make an appt. with your neurolgist and tell them at the time that you want the MRI read by the doctor himself. CD's make it so easy today, compared to the original huge copies, and you should have a copy of each one of these in your file at all times. The hospitals are very accommodating about providing them, the dept. they're done in, etc. You may be charged a small fee, that depends upon the facility, but it's worth it to always have a copy AND a radiology report. e.g. I have no idea where my shunt comes out. Yes, it makes a huge difference when faced with other surgeries, but the Dr. has left the city and even my neurologist doesn't have that report. Do you see what I'm getting at?
When one has Arnold-Chiari chances are good for Syringomyelia. Surgery today is much, much easier and is usually done at the same time as the Chiari surgery which, while sounding horrible, was actually much easier than the cord surgery I had. Things progress & that's wonderful, now take advantage of them. Personally, I meditate when I'm in the MRI. Just make certain that you have earplugs b/c it can get pretty noisy in there. I went from the earliest machines to the ones used today and they're so much better. Plus the pictures are much clearer making it easier for the neurologist and the neurosurgeon.
Don't over-worry about what may be going on. You'll catch anything now. Birth defects are funny things...if you have one chances are great that you have more than that. I'm grateful that it was found before more damage was done. In those days, I was extremely fortunate, and I know it.
An organization known as American Syringomyelia Alliance Project (ASAP....Longview, TX) will help you with this. You'll find a lot of information, including the closest neurosurgeon in your locale (who can really operate on this...it's not the hardest of surgeries, but you do want someone who has dealt with it). I'm fortunate in that I was able to track down a neurosurgeon from S. Africa who had operated on plenty of cases there. A foreign Dr. will often recognize both SM and ACM before an American Dr. Make certain your Dr. speaks good English, as that makes a huge difference in how you understand each other. The neurologist are considered the top of the totem pole in the medical world, they then descend to neurosurgeon, etc., from there. To have a good neurologist is worth his/her weight in gold...they're generally the best. You'll find ASAP on Facebook. I was a very early member who took on talking to people on the phone, helping them with insurance, and doing anything I could. As the world grew larger, I took on a lot of the phone calls from people who phoned in from around the world. Trust me, if you ever think our medicine is bad, do that for awhile and you'll understand what the word "bad" means. Which isn't to say that you should put up with an arrogant, uncaring Dr. Find someone else and one more tip: If you don't want to sit in a neurosurgeon's office all day, make your appt. for first thing in the a.m. Yes, many of them begin 5:30 a.m. or so, but it's so worth it to get in and out. Besides, traffic is better, too.
Good luck. I'm here if you need anything else or want a hand to hold. Don't assume that you have these things, but be diligent in ruling them out. Yours, Lenora.
When one has Arnold-Chiari chances are good for Syringomyelia. Surgery today is much, much easier and is usually done at the same time as the Chiari surgery which, while sounding horrible, was actually much easier than the cord surgery I had. Things progress & that's wonderful, now take advantage of them. Personally, I meditate when I'm in the MRI. Just make certain that you have earplugs b/c it can get pretty noisy in there. I went from the earliest machines to the ones used today and they're so much better. Plus the pictures are much clearer making it easier for the neurologist and the neurosurgeon.
Don't over-worry about what may be going on. You'll catch anything now. Birth defects are funny things...if you have one chances are great that you have more than that. I'm grateful that it was found before more damage was done. In those days, I was extremely fortunate, and I know it.
An organization known as American Syringomyelia Alliance Project (ASAP....Longview, TX) will help you with this. You'll find a lot of information, including the closest neurosurgeon in your locale (who can really operate on this...it's not the hardest of surgeries, but you do want someone who has dealt with it). I'm fortunate in that I was able to track down a neurosurgeon from S. Africa who had operated on plenty of cases there. A foreign Dr. will often recognize both SM and ACM before an American Dr. Make certain your Dr. speaks good English, as that makes a huge difference in how you understand each other. The neurologist are considered the top of the totem pole in the medical world, they then descend to neurosurgeon, etc., from there. To have a good neurologist is worth his/her weight in gold...they're generally the best. You'll find ASAP on Facebook. I was a very early member who took on talking to people on the phone, helping them with insurance, and doing anything I could. As the world grew larger, I took on a lot of the phone calls from people who phoned in from around the world. Trust me, if you ever think our medicine is bad, do that for awhile and you'll understand what the word "bad" means. Which isn't to say that you should put up with an arrogant, uncaring Dr. Find someone else and one more tip: If you don't want to sit in a neurosurgeon's office all day, make your appt. for first thing in the a.m. Yes, many of them begin 5:30 a.m. or so, but it's so worth it to get in and out. Besides, traffic is better, too.
Good luck. I'm here if you need anything else or want a hand to hold. Don't assume that you have these things, but be diligent in ruling them out. Yours, Lenora.
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I have agonising neck pain, skull pain , burning within the spine. Head pain pressure is severe. Can’t really move at the moment . cannot sleep more than 2 hours. If I sleep I wake with burning pain rising through my body, nerve pain all over. I find it hard to lift my head. I live in the U.K. and we do not have insurance. What hope is there for someone like me to be taken seriously or get anywhere near being reviewed? There are red marks at the back of my neck and into my skull. The GP honestlythought I had been scratching myself. Surgery sound very risky even if I could afford it. After reading all this I feel even more hopeless.
Hello Eva.....I know it's a torturous process...it was bad enough here, but there are answers and I truly think your best chance at this stage would be the with & without contract MRI's.
I do feel, however, that perhaps learning some breathing techniques or meditation would help you considerably. I have no idea what the cause of the rash is....it could be anything from meds to soap, hair shampoo, who knows? I'm not a doctor, just a woman who has been through the same ordeal you're facing. Most of us are in that very position. I've heard recommendations of ribose, I believe, you may want to try it. Obviously some people are helped.
You may have to go to London. I know the medical system there is suffering from the effects of Brexit (my husband's from Bath; my mother was f rom London), so I'm very aware of the system there.
I sincerely wish you well and request that you stay in contact with us. I'll be thinking of you. Yours, Lenora
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Go to ASAP (American Syringomyelia Alliance Project). It also handles Chiari. Also you'll find a separate society for Chiari on FB. Column of Hope is another good organization, but ASAP was the first & is the largest. Yours Lenora.
Eva.....Youtube will provide you with lessons on breathing techniques and meditation. As far as the rash goes, I noticed that you have a necklace on. If you wear it frequently, and it really isn't silver, you may be having a reaction to it. That happens to me....I doubt it, somehow, but it's worth a try, isn't it? Yours, Lenora
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No, I don't know the answer to that. I'm sure that's part of the reason for the with and without contrast. Please ask your neurologist to also read the results, not just the radiologist. Also, if Chiari is found then SM should be looked for. I made a mistake the first time around & thought of it afterwards. Yours Lenora.
I am going to try the meditation it’s hard because the pain is so severe. I have spoken to the rheumatologist today. He thinks ME/CFS and is referring me to pain clinic but said it could be a while. I asked about Neurologist and explained about the things I had read on here and the severe pain in my head/neck and he dismissed that avenue. Said I would have only pain on one side of the head if it was that. He would not listen. Sorry cant say more finding it hard to type.
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Hi Eva....It souns like you're taking things back into your hands, and that's good. Also, the rheumatologist could even prescribe an MRI. For the most part doctors don't like hearing the opinions of others, especially on the Internet. Ask him for his help, tell him you need it b/c you're bedridden you firmly believe that the pain is caused by something. It's a misnomer to think that Chiari causes a one-sided headache...that's crazy. It can have multiple symptoms, sometimes as in my case, it causes severe neck pain...and I'm talking severe. Talk to anyone who's been through it and they'll all have a slightly different story. You're computer proficient, send him a letter explaining the situation again, keep a record of everything, and I do mean everything, it proves to be helpful time and time again.
Also, I would start with the breathing techniques. It can take time to really get into meditation. However, the breathing techniques are easy and can be done from the first time. I think you'd find them helpful. Where are you in England? (if you want to tell me. If not that's fine). You're on the right road, just keep fighting for yourself. Contact ASAP, ask for a packet of information (about Chiari, although they used to combine the two) and send it to your doctor, with a note asking him to kindly read this information. I'm truly sorry that you're in such a dark place and hope that the old savior, Tincture of Time, will help. I've found that it always does. Best wishes, Yours Lenora.
Also, I would start with the breathing techniques. It can take time to really get into meditation. However, the breathing techniques are easy and can be done from the first time. I think you'd find them helpful. Where are you in England? (if you want to tell me. If not that's fine). You're on the right road, just keep fighting for yourself. Contact ASAP, ask for a packet of information (about Chiari, although they used to combine the two) and send it to your doctor, with a note asking him to kindly read this information. I'm truly sorry that you're in such a dark place and hope that the old savior, Tincture of Time, will help. I've found that it always does. Best wishes, Yours Lenora.
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Hello Lenora,
I am from Manchester.
The neck, upper spine and head pain (mostly back of skull ) is very severe. I keep trying not to cry and breathe but it’s difficult. I have tingling hands and burning all over but I don’t have loss of feeling or anything like that. I have the calm app on my iPad now. He said I will put your mind at rest with all this- you don’t have cancer. I know he means well but it didn’t make me feel better. He said your pain is all over and if you had damage or something wrong it would be on one side.
I am trying to be really careful and do same/ similar activity- basically going to the toilet as yesterday, but the pain is even worse today, I don’t understand what I’m doing wrong. I even slept an extra hour or so. He said just keep trying to move a little more each day. The only thing he said that made me feel better was that anxiety and depression are the result of your pain. Whilst being calm helps , it is not causing your pain , which the GP and other doctors have not acknowledged, as if I just need to calm down and get on with life.
He said my pain centres are not functioning properly. He did ask if I had had ulcers in my mouth (which I have) which I thought was interesting.
The only thing I did different was last night I tried to massage the area and after that it was so much worse. I spoke at length to him this morning and my sister and a friend. Can something as simple as this be too much activity for me? Have you found anything for your neck/head pain?
I am not sure I am due to see him again, but he wanted one more blood test which I will have on Monday. When I lean back on my neck and back the pain is also worse then. Does this mean anything? I’ve also joined a local support group and she gave me some tips. Said the advice about not investigating the neck pain from the doc was not good. Sorry for all the questions.
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Hi Eva....My husband lived his youngest years in Manchester and went back there for university. I'm glad to see the resurrection it's had.
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OK...Have you tried ice yet? Here Ace Bandage makes a wonderful blue cloth covered ice pack. It doesn't freeze solid, and just needs to be wrapped in the lightest of tea-towels. Get the largest size possible, and use it for 15 minutes on, then 15 minutes off. You should have two in order to do what I just said. Ice does help more than heat, just don't overdo it.
You aren't doing anything wrong....you need some help. A dose of an anti-depressant may work wonders...and that's given for pain relief, not b/c you're out of your mind. It has been known for a long time that levels of serotonin play a role in pain.
I don't know why he asked about mouth ulcers, you should have asked him. OK, now you know that massage doesn't work, that's one less thing to know you have to do. It sounds like you may have some Restless Leg Syndrome going on...I also suffer from that.
I no longer have head/neck pain since I had my brain surgery. Well, yes, things can tighten up (pain is generally caused by nerves, which give a burning pain, and muscular which can give some burning, but a lot of tightness), but my osteopath keeps that under control and I've learned methods of helping myself. So no, for the most part my neck/head are fine....again!
He's probably right about the pain centers (which would come from the brain to the cord). That's why some of these meds could work for you. The woman who told you about the neck pain is absolutely right. Personally, it sounds like something fixable...and that's why you need an MRI of the head/neck. Lenora
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OK...Have you tried ice yet? Here Ace Bandage makes a wonderful blue cloth covered ice pack. It doesn't freeze solid, and just needs to be wrapped in the lightest of tea-towels. Get the largest size possible, and use it for 15 minutes on, then 15 minutes off. You should have two in order to do what I just said. Ice does help more than heat, just don't overdo it.
You aren't doing anything wrong....you need some help. A dose of an anti-depressant may work wonders...and that's given for pain relief, not b/c you're out of your mind. It has been known for a long time that levels of serotonin play a role in pain.
I don't know why he asked about mouth ulcers, you should have asked him. OK, now you know that massage doesn't work, that's one less thing to know you have to do. It sounds like you may have some Restless Leg Syndrome going on...I also suffer from that.
I no longer have head/neck pain since I had my brain surgery. Well, yes, things can tighten up (pain is generally caused by nerves, which give a burning pain, and muscular which can give some burning, but a lot of tightness), but my osteopath keeps that under control and I've learned methods of helping myself. So no, for the most part my neck/head are fine....again!
He's probably right about the pain centers (which would come from the brain to the cord). That's why some of these meds could work for you. The woman who told you about the neck pain is absolutely right. Personally, it sounds like something fixable...and that's why you need an MRI of the head/neck. Lenora
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