[momzpeachy]

Hi all

I am not doing well at all. I posted in the spinal forum as well. I have so many symptoms going on and they are to figure it all out. Of course the PT and Dr's first thought is cervical spine problems. So I had the MRI done. The PT thought it would show much worse problems to explain all what's going on. I have disc protrusion at C4-C5 and a diffuse annular bulge at C5-C6 with left uncinate hypertrophy.

I have not been able to sleep. I keep waking up with pins and needle feelings, burning and numbness in both hands and sometimes feet. I get it so bad in the right hand that it HURTS! Anytime I lay down I get these shooting feelings. I bend I get them, I move I get them. I get them when just sitting doing nothing. I almost died last night having a BP MRI done of the left side. I made them stop and they had to call 2 nurses in to treat me. I was sweating and breathing so fast and irregular. I almost passed out. I cried. THey couldn't figure out what was wrong with me.

I just spoke to the PT this morning and he is pretty certain I have bilateral TOS. Left side now ..peachy! Also it was explained to me that one of the complications from surgery is permanent nerve damage. Well, that may be the case for me. I have all the symptoms of Autonomic neuropathy as well as Peripheral Neuropathy. I am having trouble emptying my bladder, can't eat much, rapid breathing, heart races, sweating. dizziness, no sex drive anymore as well as everything else.

I'm upset because if this is what it is...It's permanent and nothing anyone can do. It sucks! Now I have the other side to deal with also. Here are some links..does anyone know anything about these following TOS surgery?

http://www.mayoclinic.com/health/aut...544/DSECTION=1

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

[Jomar]

Tshadow thinks hers has gone in this direction too, or in conjunction with her TOS.. she had some posts about a month or 2 ago I think with info on it.

[momzpeachy]

Hi Jo

Thanks for the info. I did a search and found the posts. I guess I'm not alone here. I'm just so tired of doing the research first then going to my Dr's for help. I should be getting something for all this other than pain!

It looks like I'm in a world of mess and will never be the same. Long road ahead! If they mention surgery for my left side....NO WAY!

Thanks again...take care

[astern]

One of our members, Beth, was heading in this direction too - but she had Ketamine treatments and found some relief.

Beth, if your out there, how ya doin' my friend??

Maybe you could PM her and ask if relief is still happening for her?


Anne

[mtnmom]

Hey Momz!

You say the MRI showed a disc protrusion at C4-C5 and a diffuse annular bulge at C5-C6 with left uncinate hypertrophy. What is the treatment? What does your doctor say? And can they find out for sure if you do have nerve damage?

Im sorry you are going through all of this and I hope things start to get better for you soon. You are way overdue for some good news!

[Peg24]

With the pins and needles feelings, are they sure you are not dealing with any RSD also?

Just a thought!

Peggy

[momzpeachy]

Thanks for the replies!

I sure wish I had some answers. The Doc is still trying to put things together and find what's going on. I have an appt tomorrow morning to go over everything. when this all started a year and a half ago, the neurologist felt something else was going on other than the TOS but he didn't do anything to find it. He said he couldn't figure it out so left me hanging. Honestly, I think something is going on with my spine and nerves are being pinched but no one seems to think so. They look at my MRI and then say "that's pretty normal at my age". I have bulging discs, osteophytes and spondylosis...that's normal? Maybe it is but I have all these symptoms! Also they did a lumbar MRI and I had bulging discs there too back in Nov along with a tear in one. But again no one gave it any weight. They don't seem to think that's the cause of my symptoms. Now they are confused because I had the TOS surgery which no doubt confirmed the TOS but I went from bad to worse. The surgeon felt the surgery was a success and I'd be better. NOW I"M MUCH WORSE! What the heck happened?

Does anyone know where to find a GOOD neurologist/neurosurgeon in PA or surrounding area? I believe I need one!

Thanks for all your concerns and good thoughts.

Momz

[beth]

Momz,

As hard as it is, it's critical to stay as calm as you can manage, cause stress will keep the nerves flared up - the more upset you are, the higher your pain. Trust me, I've been through it!

Since you had scar tissue before, it's possible that is again the problem - I was told by my TOS surgeon we would know within 2 months if scar tissue was going to be a big problem after surgery. He's had a LOT of experience and comes highly recommended, so I don't second-guess him when it comes to most things TOS.

One thing you might consider is to speak with some of the top TOS surgeons - the ones who do re-dos - and explain your situation, see if your sx sound as though they could be caused by a return of scar tissue. Perhaps they can give you more insight, whether it's unlikely, or whether they DO see these symptoms presenting in some patients following a scalenectomy. Then it might be worth going to see one or more of these surgeons in person.

If they don't believe it sounds like it's related to the TOS surgery, but more likely to be spine-related, then it's time for a REALLY good second opinion. A teaching hospital attached to a university is usually the best place to look for skilled Drs who have stayed fairly up-to-date. If you strike out there, or there isn't one close, you might want to think about getting a referral to a top
major hospital, but be sure to do some research so you know the department and Drs YOU will need are top-notch. Being in the MidWest, Mayo's has always been praised as the answer for every health crisis, however since being injured I've been told it is not the best facility for treatment of chronic pain, TOS and RSD. I've heard similar tales of Cleveland Clinic. But their other departments may be first-rate, not saying they aren't, just saying do your homework ahead to avoid nasty surprises!

The IV-ketamine did help for several months, probably would have helped longer if I hadn't let all the legal and financial garbage get to me. But that was the last resort, prior to that I also had tried a IV-lidocaine 5 day inpatient program. My body didn't tolerate that, I got really sick as the dose went up around day 3, but if you can tolerate it, it's less scary than the ketamine. While I was on the waiting list for the IV-ketamine I was taking a
rx'd med called mexilitine, a cardio drug that is also used for RSD.

One thing I did find helpful was warm water therapy. I find any other PT too painful - especially the next day. But a pool that is specifically set to a higher temp for arthritis classes doesn't make me chill, I can do gentle exercise, then relax in the hot tub with the jets aimed at my trigger points. As long as I keep the time in the hot tub to 10 minutes, and don't overdo on the exercising, I don't suffer a painful flare the next day. Of course, it's been almost 2 years since insurance stopped all PT, so that's just a pleasant memory.

I really hope you find some answers soon! It's horrible to know there's something really WRONG going on, and the Drs can't figure it out and don't seem to care. We care, and we know what it feels like.

beth

[cindyj]

Well I havent been here in months ,with everything going on in life time is a major luxury and something i dont have much of. Im in a very major flare of my left (surgery side) side of my body and cant even use mt left hand a bit.
I guess im sure not the only one who has had no help and more pain from the surgery. Im so sorry everyone, that i have been away soo long. I had to have other unrelated surgeries and biopsies, i have my grandaughter (she'll be 1 on thursday!) almost everyday, and the troubles and other health problems are never ending.My typing is limited tonight , so i wont write a novel lol. There was only 1 doctor who did tos surgery here and i was on his wait list 2 years before i finally got in. It took over 7 yrs to disgnose ,because of the rsd, and fibromyalgia ,and i thought i was finally going to get some relief. It has been 15 months and im getting worse this past 3 months. It never got better and now its worse than pre-surgery. I also have tos in my right side but not as severe yet. I will never have the surgery again , no matter how bad the right side gets. I have never recovered from the surgery or complications and have never gone back to the dr. He didnt even do an mri to look at the muscle bands before suregery, weven though this was a major problem with me.He just took out my rib and sent me home next day. My lung collapsed , my chest filled with 2 and half litres of fluid and i almost died. I saw the dr, 2 months later for post op check,i was in his office for less than 5 minutes .He looked at my incision, i asked about physio and he said it was unneccesary and sent me hiome. That was it, have never seen him again and i never want to. So Ive just been getting increasingly worse excrutiating nerve pain, muscle pain, and everything in between. I havent bothered to see any but family doctor, because there is only the one surgeon here who deals with tos and i wont go back to him. I truly wish i had never had the surgery, because ive never been the same.
I didnt have any choice in doctors,im not telling people to not have suregry by any means! Im saying, if u can afford to go to the US to one of the top tos surgeons, who use all the cutting edge technology and who do this daily for a living, then please go!!! I got a thoracic surgeon, who has done several of these, not thousands! I had no choice because of where i live and my financial situation,so i trustingly put myself in the care of this only surgeon that does tos surgery here. He literally took my rib out, dismissed my questions and sent me home. Momz, it sounds like you are in an area where you might have some choices hun, please really do your homework and get a 2nd opinion. I know how you are feeling hun , and any other work is the last thing you want to thnk about, but you need to be pro-active about your health and your body hun. I kept silent and trusted, and ive been thru the health care system way tooo many times for me to trust, so it was my own fault i guess. I will pray for you hun , and i hope you will get some answers. Ive just given up on going to doctors anymore.I cant face anymore surgeries, ive had so many i cant even count them, but none of them have ever left me in this kind of shape.It never got better, and i didnt think it could get worse, but its been 15 months since my surgery and in the last 3 months ive just gotten worse and worse and worse. I just try to get thru today. Thats what i do everyday now. Thank God for the blessing of my grandaughter, she has been the only joy, and even though it is exhausting and extremely painful to have her everyday (hubby is disabled too so he helps alot) she is the onyl thing that keeps me going. She smiles and lights me up like sunshine.Yes having her causes great pain, but not having her and trying to get thru this pain woudl be devestating. She is my reason to keep going on.
Even though i havent been here inmonths i have still kept all of you in my daily prayers. I hope to find the time to read alot here and catch up on evryones life.
Momz, hang in there hun, take it 1 day at a time. I pray for God to bring you relief. Ive got to stop typing, but hope to get back here again soon. take care, cindy

Originally Posted by beth

Momz,

As hard as it is, it's critical to stay as calm as you can manage, cause stress will keep the nerves flared up - the more upset you are, the higher your pain. Trust me, I've been through it!

Since you had scar tissue before, it's possible that is again the problem - I was told by my TOS surgeon we would know within 2 months if scar tissue was going to be a big problem after surgery. He's had a LOT of experience and comes highly recommended, so I don't second-guess him when it comes to most things TOS.

One thing you might consider is to speak with some of the top TOS surgeons - the ones who do re-dos - and explain your situation, see if your sx sound as though they could be caused by a return of scar tissue. Perhaps they can give you more insight, whether it's unlikely, or whether they DO see these symptoms presenting in some patients following a scalenectomy. Then it might be worth going to see one or more of these surgeons in person.

If they don't believe it sounds like it's related to the TOS surgery, but more likely to be spine-related, then it's time for a REALLY good second opinion. A teaching hospital attached to a university is usually the best place to look for skilled Drs who have stayed fairly up-to-date. If you strike out there, or there isn't one close, you might want to think about getting a referral to a top
major hospital, but be sure to do some research so you know the department and Drs YOU will need are top-notch. Being in the MidWest, Mayo's has always been praised as the answer for every health crisis, however since being injured I've been told it is not the best facility for treatment of chronic pain, TOS and RSD. I've heard similar tales of Cleveland Clinic. But their other departments may be first-rate, not saying they aren't, just saying do your homework ahead to avoid nasty surprises!

The IV-ketamine did help for several months, probably would have helped longer if I hadn't let all the legal and financial garbage get to me. But that was the last resort, prior to that I also had tried a IV-lidocaine 5 day inpatient program. My body didn't tolerate that, I got really sick as the dose went up around day 3, but if you can tolerate it, it's less scary than the ketamine. While I was on the waiting list for the IV-ketamine I was taking a
rx'd med called mexilitine, a cardio drug that is also used for RSD.

One thing I did find helpful was warm water therapy. I find any other PT too painful - especially the next day. But a pool that is specifically set to a higher temp for arthritis classes doesn't make me chill, I can do gentle exercise, then relax in the hot tub with the jets aimed at my trigger points. As long as I keep the time in the hot tub to 10 minutes, and don't overdo on the exercising, I don't suffer a painful flare the next day. Of course, it's been almost 2 years since insurance stopped all PT, so that's just a pleasant memory.

I really hope you find some answers soon! It's horrible to know there's something really WRONG going on, and the Drs can't figure it out and don't seem to care. We care, and we know what it feels like.

beth

[finz]

Momz...... I am so sorry that you cannot find any relief.

I pray for you