Neck Problems Anyone?

[erickamcc0523]

Where to start with my neck problems? Like everything else health-related and me, it's fairly complicated, and has pretty severe symptoms. I have a reversal of the lordosis from the anatomically correct position. Also, from around C3 to C8, there is inflammation and degeneration of at least some part of the vertebrae. Some have facet joint problems, and some have mild to moderate stenosis and degeneration of the disks. Also, all of the peripheral nerves that comes from the spinal cord are very inflamed and it causes great pain from the top of my head (the auricular and occipital nerves, when really irritated, cause a headache that is in every way, except for cause, like a migraine, including aura and nausea) to my shoulder blade. The ones that goes into the trapezii at the base of the neck and down to the shoulder are so bad that the muscles are in a permanent spasm. Some also affects my arms and go all the way down into my fingers, which then gets somewhat painful (mostly burning sensation) but somewhat numb at the same time.

I've been to physical therapy, I'm taking muscle relaxers (although I'd rather not... side effects aren't so fun), and the next step is what's going to happen tomorrow (actually, now it's today) afternoon. I'm getting the first set of three injections in my neck, around the disks and the facet joints. They're doing it with fluoroscopy, and the person doing it has done it several hundred times. I am praying that this will work, because I will not take the next step, which is fusing some of the vertebrae together. I guess yet another diagnosis has brought up anger towards yet another medical specialty, this time neurologist. I went to at least two different neurologists, had a few MRI's done, put on a ton of anti-migraine medicine (none of which worked), and then sent off, after that didn't work, with yet another malingering and hypochondriac diagnosis. I'll stop right there before I go on a rant.

Anyways, anyone else have horrible neck problems? Any advise on how to deal with that, on top of everything else?

[Rachel]

I don't have any advice for you. I just wanted to say that I hope the procedure goes well today, and I hope that the nerve block is very helpful for you.

Rachel

[blueskies]

Hi Erika,

I wish you well for your proceedure and let us know how you go.

I'm a chronic migraineur. The only consolation I can take from it is the word 'migraineur.' It sound so french. The rest of it *****.

I really hope your proceedure is a great success. Fingers crossed.

blue

[erickamcc0523]

Thank you guys for your well wishes. Initially, it was very difficult, but later yesterday evening (after a POTS crash, however) and today, everything has been feeling about as pain free as it has in a long time. My trapezii are still in a spasm, but I have already been told that I might have to get pain blocks directly into the muscles since they have been spasmed for so long (for at least 3 years... Bad treatment from other medical professionals caused me to just not even mention my neck pain until it became extremely unbearable and it started shooting down into my hands and it prevented me from playing piano and organ... Nice priorities, I suppose). I ended up with 8 shots in my neck, and I have two more injections to do on just my neck, and then a follow-up eval. 2 weeks later.

Anyways, why it was so difficult during (and some afterwards) is that since everything has been so painful and tensed up for so long, just barely touching my neck can cause me to jump. I literally started crying (and I can't say when the last time I cried from pain... it's probably been a decade or longer, and I have dislocated several joints, gotten a tattoo right on top of my right foot, had knee surgery twice, one gallbladder surgery after several years of occasionally ending up in ER's on IV fluids, morphine, and pheneragn because of gallbladder attacks, and many, many other moments of pain) by the time he did the second shot. He was really nice about it, and kept asking me if I was ok, and laughed when I said I wasn't, but I wanted to get everything done with so he should keep going. I guess from the bad pain, in addition to crazy weather the past week (wide temperature ranges and several storms and different types of fronts moving in and out... East TN is the one of the worst possible places for a POTSie to live), I ended up EXTREMELY nauseous, shaking, very off balance (I looked like I was three sheets to the wind when I tried to walk, and I had to hold on to my mom walking out of the office so I wouldn't fall on my butt), sweating, very tachycardic (I tried to check it but couldn't, but my pulse felt to be at least 150, if not more. Brain fog makes it hard to count that quickly), and basically all of the lovely cookings of a POTS crash. If I had to stand any longer than I did at one point, I would have fainted.

When I got home, I went right to bed and slept like the dead for 5 hours, woke up about midnight feeling somewhat sore, but after putting on my TENS unit with an ice pack, it was pretty much gone. I've been somewhat sore at the injection sites most of the day, but I can tell a very big difference in the stiffness and the pain that comes with movement. I've not rotated my neck this quickly back in forth in almost 2 years!!!

I hope that this will alleviate the pain enough to hold off from surgery for several years. I've been told that if the injections don't help with pain, or if they stop helping with the pain, the next step is vertebral fusion surgery. I intend on seeing Dr. Francomano before I even get near that point, and even if she can't tell me what to do for my neck, I know that she'd send me in the right place for answers (or at least just from what I've heard about her).

Ah well, I guess I should go to bed and go say hello to the triplets (you know, Winken, Blinken, and Nod?). More neck saga later!

[mkoven]

I have a range of neck issues and an eds-like disorder. I highly recommend Francomano. She sent me to a local neurosurgeon who put me in a hard collar. I've been wearing an aspen vista collar for almost a year, and it REALLY HELPS headaches, and my ans issues. It's hot in the summer, unattractive, and makes people stare, but the benefits are well worth it. I plan to avoid surgery as long as possible if not forever. I now have a scarf collection to make it a little less "in your face."

[HopeSprings]

Erika -- hope the injections help. This has been suggested to me as well, as I have a disk pressing on the nerves going down my arm, which causes weakness in the arm -- but I am too chicken to get a needle anywhere near my spinal cord! You are very brave!

MKOVEN-- Just curious as I have neck issues as well -- what made your Dr. decide to put you in a collar? I have been wondering if a collar would help me because I have reversal of the curve in my neck as well as disk problems. My neck tends to stick forward and when I am feeling my worst (dizzy/POTsy), I have tons of pressure in the back of my head and neck. How does it help your ANS issues?

[mkoven]

i have both cranial-cervical instability and some stenosis, enough that when I let me head go even a little forward, I'm actually pinching either my brainstem and/or my spinal cord. Specifically, I have a buildup of tissue on the odontoid from the instability. Not all neurosurgeons look for the cci, but it's common in eds. in some cases, dysautonomia is actually a consequence of pressure on the brainstem, as it is the brainstem that regulates much of the ans. this is a huge area of research and controversy in eds. some folks actually get a surgery to fuse the head to the neck. I'm in no rush to have surgery, but the brace has really helped me. Google "retroflexed odontoid" or "basilar invagination." Many of my ans issues, headaches, nausea, vertigo, tinnitus and more stopped when I began wearing the brace. Some people are concerned about atrophying muscles. But honestly, if one is banging around one's brainstem and/or spinal cord, that is a big deal that shouldn't be ignored.

[erickamcc0523]

It wasn't so much bravery as it was desperation that allowed me to get the injections. Like I said in a previous post, it wasn't until the pain and numbness shooting down my arms began affecting my piano and organ playing did I actually seek help with it.

I am in the process of making an appointment with Dr. F (she has ALOT of paperwork to fill out before even the first appointment, and my hands are hurting too much lately to even write, so I think that I might just type everything out). It's also a long distance, and I don't do well with either long road trips or plane rides (perhaps a 3 hour flight from where I live). But I suppose that I'm at a level of desperation with everything hypermobility and the joint degeneration that usually accompanies it, that I'll just bit the bullet as best as I can.

[HopeSprings]

Mkoven -- is this something that would readily show up on an MRI of the head or neck? I have had multiple MRI's and none of this was ever mentioned. Would it have been picked up by a radiologist or neurologist or is it something only a Dr. very familiar with would notice? Just trying to get to the root of my problem -- trying to rule out causes one by one. Thanks.

[mkoven]

my mris were read as relatively normal (except for herniation/stenosis), till I saw eds and chiari experts. They are few and far between, sadly. the odontoid problem and slight chiari were only picked up last summer. i don't have anyone in-state who is really up on this. my geneticist is Francomano in MD. I've seen Heffez in WI and Henderson in MD as neurosurgeons. they saw somewhat different things, but both agreed I would benefit from wearing a collar. and I do. better than any drug-- though I still take my share of meds.

[kitchmill]

Where to start with my neck problems? Like everything else health-related and me, it's fairly complicated, and has pretty severe symptoms. I have a reversal of the lordosis from the anatomically correct position. Also, from around C3 to C8, there is inflammation and degeneration of at least some part of the vertebrae. Some have facet joint problems, and some have mild to moderate stenosis and degeneration of the disks. Also, all of the peripheral nerves that comes from the spinal cord are very inflamed and it causes great pain from the top of my head (the auricular and occipital nerves, when really irritated, cause a headache that is in every way, except for cause, like a migraine, including aura and nausea) to my shoulder blade. The ones that goes into the trapezii at the base of the neck and down to the shoulder are so bad that the muscles are in a permanent spasm. Some also affects my arms and go all the way down into my fingers, which then gets somewhat painful (mostly burning sensation) but somewhat numb at the same time.

I've been to physical therapy, I'm taking muscle relaxers (although I'd rather not... side effects aren't so fun), and the next step is what's going to happen tomorrow (actually, now it's today) afternoon. I'm getting the first set of three injections in my neck, around the disks and the facet joints. They're doing it with fluoroscopy, and the person doing it has done it several hundred times. I am praying that this will work, because I will not take the next step, which is fusing some of the vertebrae together. I guess yet another diagnosis has brought up anger towards yet another medical specialty, this time neurologist. I went to at least two different neurologists, had a few MRI's done, put on a ton of anti-migraine medicine (none of which worked), and then sent off, after that didn't work, with yet another malingering and hypochondriac diagnosis. I'll stop right there before I go on a rant.

Anyways, anyone else have horrible neck problems? Any advise on how to deal with that, on top of everything else?

Wow, I could have written your post almost word for word! Same pains, migraines, been to PT, etc. I've also had trigger point injections MANY times, and once my pain got so bad that I concented to facet injections. SCARY! But, it did work to relieve the major spasms. Unfortunately, I'm left with the daily/regular spasms still. My next step at this point is to see my neuro. Had an appointment set up with her which got cancelled, so I'm waiting for my rescheduled appt now. I have no idea what to expect though. I'm just tired of all of the pain and migraines at this point. Everything that I've tried (migraine meds, preventative meds, physical therapy, injections, acupuncture) seems to work for a period of time and then I feel like I build a tolerance to it and I'm back to square one.

So, no advice, but I can totally empathize with your situation!