HELP - Total frustration!
 

Hi everyone

I haven't been on in a while and I miss talking with everyone and reading all the posts. I have been so busy lately with my daughter and her medical conditions and then also dealing with mine. I'm totally losing my mind!!!!! I'm at a breaking point! Ok, think I've been there for a while now...now I'm hanging on by my fingernails.

I am in SO MUCH PAIN! I am so ****** off! My neurologist dumped me off on another Doctor at a pain management center. He said the trigger point injections weren't working..well no duh..I told him that after the 3rd one but he insisted on going to 6x and still nothing. So then he wanted this other Doctor to try facet joint injections. Well, I went for a test block on Monday. It didn't do anything. I didn't get the results they were looking for so that's not it. I was good and numb for 2 whole hours and then mypain level was up to a 15 (on a scale of 1-10) and this was by 6:00 p.m. and the injection was at 11. So then the office told me they would call me the next day to see what the Doctor "wants to try next"

I get the call the next day and now he wants to try it again and go on the left side now too just to see how that work. SAY WHAT! Now both sides - more needles in my neck! I don't think so!

Since Monday...my pain has been 10x worse and nothing relieves the pain. No heat, no medication, no nothing. I also have a numb hand all the time. I don't feel things when I pick them up. Then I get a fire feeling shooting down my arm then my hand gets warm almost hot. I can't move my neck hardly at all. I can't look down. When I do OH MY GOSH IT HURTS. The back of my neck hurts and burns so bad. I get dizzy and feel like passing out. I can't use my right arm at all. I can't even move my clothing in the closet with my right arm! THIS IS REDICULOUS! Now here's more...

I now have back pain...of course on the right side. It hurts to cough. It hurts to bend. It hurts to sit. It hurts to lay down. Now the pain is in my legs. I can't get up the steps without tears. I then get burning in my knees. Ok, now what..I'm getting worse and no treatment! Nobodyknows what to do.

So I started reviewing my records and makingsome phone calls. I had a C Spine MRI in Feb and on the report it shows some things. At C4-5 disc osteophyte complex with a small central protrusion. Minimal canal narrowing. At C5-6 there is a small central disc protrusion with mild central canal narrowing.

Impression: Mild spondylosis as described

Now why has nobody looked at that and mentioned it! I also told the neurologist that rheumatoid arthritis runs on both side of my family and also osteo arthritis and osteoporosis and generative disc disease. My grandmother, my mother, and my aunt all had neck surgery in the same area and all had the same pain and same problems.

I WANT TO SCREAM! What if this is not TOS and not work related. What if it is a spinal problem. I also had a hysterectomy 3 years ago which can start these kind of problems. When I originally told my neurologist all this stuff...he told me "I was too young to worry about those kind of problems"

Ok, help me here...where do I go from here?

I have na appt with a neurosurgeon tomorrow. I don't know this Dr or anything about him but I need help! HELP HELP HELP!

ok..I gotta go...hope all of you are well...

Now I have been diagnosed with carpal tunnel, TOS, myofascial pain syndrome, and possible RSD...but what if it's none of those!

Do they refuse to try any PT for you??

And I mean PT for pain and symptom relief only for now - no exercises, weights, or anything like that at all.

Which means - ultrasound, heat, massage, posture evaluation and rest.
If a PT place is really advanced they will be able to work on TrPs by hand, use low level laser or Interferential stimulation{ low settings}.

and only the basic minimums of driving, cooking and cleaning.

how far away are you from Dr Togut? He is in PA.
Pennsylvania

Dr. Robert Young Rhee / Asst. Professor of Surgery
Presbyterian University Hospital
Pittsburgh, PA.
(412) 383 - 7074
E-mail: rhee@pittsurg.nb.upmc.edu

Dr. Allen Togut
166 Hanover St. Wilkes-Barre, Pa 18702
Phone: (570)824-2500
E-mail: ajtogut@epix.net
fax: (570)824-7910

Dr N. Gupta
UPMC Bower Hill Rd
Pittsburgh, PA 15228
Phone: (412)648-4000

Momz
 

Momz, for a fast action to bring down pain a good thing is a shot of Toradol!

Toradol is a kick butt I guess Asprin type med, it is an antiinflamatory. In flare ups I took my daughter to PCP to get a shot in her rump and great instant help...in and ER with Iv they give it that wasy. But I really think the Butt shot last longer and faster. Additionally in that high of pain, valium as a muscle relaxant.

Toradol is not narcotic so doc's are genrally hip to give it!
It also is wonderful for cervogenic headaches of others get them.

I took my daughter to PCp not wanting to have her unable to walk or move in pain in the upper trap all the way down to the lumbar....one long spasms, The PCP gave her the shot in the rump, and she walked out of there, like a healing. She still ahd pain, but could move, an reduced it 75%

I suggested before that you are so close to Dr,.Scott Fried at the upper extremity institute, near Plymouth meeting mall that it is extremly worth the trip. www.nervepain.com Dr. Fried is a total picture person and instinctivly KNOWS what will help and what will not.

Dr.Togut is up here in Wilkes Barre, I know he does trigger points, a whammy one, and botox, but no facet or other invasive'
Advanced pain management Dr Bell, is agressive with injections.

I am so sorry that your hands are filled with your daughter, my prayers go out for you both. You could use a group hug... :grouphug:
Love
Di

Momz- sorry i don't really have any suggestions other than the hot tub.
DO you do any better with IV meds than with oral? I know allergies were a problem.

Thinking of you.

Johanna

I hope you get this all sorted out momz... is there another Pain doc you can see? while they are generally not the final answer to our problems, in my humble opinion, they can be immensly helpful (provided they know their stuff). good luck.... :hug:
oh - and i like the toradol IV suggestion. that shoudl be helpful.

I'm praying for you Momz.

Have you been able to get a referral for PT ?

Hi guys

Thanks for your replies and support. I just had to vent some the other day and I am just starting to shut down. I am so frustrated with the health care system! I just don't get it.

I saw a Neurosurgeon Friday and I came home crying. He gave the diagnosis of degenerative disc disease. I have all the signs of it according to my MRI of the cervical spine. I have straightening of the lordosis with herniated discs and my whole c spine is narrowing. I have spondylosis. I got to see the MRI since the hospital put it on a disc. The herniated discs are right up against the spine and he thinks that's where my problems are coming from.

Degenerative Disc Disease runs striaght down my familyline along with rheumatoid arthritis. 10 years ago I was told that I had the RA factor when they did a blood test. Nobody looked any further since. My mom has everything that I have going on and she has been getting epidural injections and PT. THey won't do surgery on her.

I have now had 2 neurosurgeons wonder why the heck I haven't been getting PT...and I wonder the same. I've asked for it but the neurologist wouldn't send me for it yet. Instead I've bene getting NOTHING! So now the 2 new surgeons who reviewed my records are suggesting epidural injections and PT and further evaluation.

Nobody has done an MRI of my WHOLE SPINE! Hmmmm....My back has been bothering me (mid to lower back and yesterday my husband scratche dmy middle back and I didn't feel it...it was numb) My left ankle is swollen and my foot is constantly numb, I have pain in both legs and am having trouble walking. I know something is wrong. My husband said I look like I'm 80 years old and I'm only 34! It takes me forever to get upstairs...this is NUTS! What I don'tlike is the numbness I;m getting in my hands and feet. and my back now...this scares me.

So now...I wonder...did the neurologist make a mistake in the diagnosis because he won't even talk to me. I can't get a hold of him. He passed me along to a pain management center. he never mentioned any of those MRI results and I really think he should've looked at everything a little more closely especially given my family history.

I may have TOS too according to the neurosurgeon but he thinks my main source of trouble is my spine.

Now that I have a PPO for insurance ..I am going to look into seeing a rheumatologist. And then a different neurologist for a second opinion. What do you think?

momz- yes, I'd try to get several opinions. :hug: I think in general Drs have a hard time with Nerve Dx's. This does not sound like great news, but shoudl be much better to chase the correct problem. I might just ditch the first neuro if he was so far off, or make a full on appt with him to so and talk about his take on your cervical spine MRI is and why he did not consider Degenterative disc disease.

as for MRI of the spine- they can usually only do one part at a time. SO, to get your whole spine you have to get three MRI's, cervical, thoracic, and lumbar separately.

If you are in PA, maybe it would be worth it to get someone to refer you for the MR Neurography to see what the nerves are up to.

(see www.nervemed.com)


good luck.
Johanna

I wouldn't give that first doc any more money buy seeing him again-
It didn't sound like the best tx plan to me in the first place.
IMO - you don't just give injections with out knowing the real cause of the pain.