Hello everyone! I wish you all the best and pain free days!
I finally called my spinal surgeon yesterday and told them that my pain in the arms and hands just unbearable. When i lay in bed, pain gets ever worse. I get up in a middle of the night to go the lady's room and can't use my hands to pull pg down: they clinched and so painful. I can't raise my arms to even brush my teeth or wash my face. This is started a month after my second spinal (lumbar) fusion.
They made me an app to see today Arm/hand specialist at HSS; I took my MRI reports and went to see him. He confirmed that I do have turned (SP?)ligaments/muscles and non-repairable tears. He said that nothing really there what they can do but surgery. But since they have now a DR, one is only one at tri-state area, who was part of the research group at CA hospital, who is doing experimental blood infusions in elbows ( my own blood) he suggests to try these treatments.
According to him reports show up to 90% pain relieve and some patients can avoid surgery after having the treatments.
DR doesn't participate insurance. His first consultation is $400.00 and treatments $500.00 each. How many treatments do i need - have no idea yet. I have both arms affected, so I don't know yet how much in total it could be.
I want to ask if anybody ever heard of these blood treatments or even had this done. My hubby and I decided to have this done no matter what because surgery and recovery is very painful and long. I went and go every day through so much pain and health issues so to add more to my agony by having both arms operated, by not be able to use them for month and month (one at the time) - the thoughts of it makes me very unhappy.
He also thinks that my symptoms will be helpd partially only ( by treatments or surgery) since he believes that all the pain coming from neck and thoracic area caused by spinal nerves involved. Neck - shoulders - arms - hands - fingers. This is becides the elbows pain and problems.
I have to go and see Dr Camissa again soon to determine where exactly pain is coming from and what they can do to help. I just pray that I will not need another spinal fusion. I am trying hard to stay positive and hopefully everything will be OK.
Re: Had an app today about my arms/hands problems...
Moldova,
I have not heard of this, but it sounds like it's worth a try. I cannot even begin to imagine the amount of pain you have in your arms, but I can a little bit understand what having arm/shoulder surgery is like. I had to have a rotator cuff repair/bone spur removal and the recovery was very difficult. I can really relate to the part about the PJ's. I would research this procedure as much as you can, but if you can avoid surgery it would be worth it. I will be keeping you in my prayers.
Re: Had an app today about my arms/hands problems...
Moldova, I am glad that you got in to see someone finally. I have been thinking about you and wondering how you were. I know you have not been posting much because it is so painful. I wish there was some way you could have voice activated dictation or something, lol!
I haven't ever heard of these blood treatments, either. I would agree with Tigg that you should do as much research as possible, just so you know everything you can before going forward with it. If it can keep you from having to have any more surgery right now, then it would clearly be worth a try.
I am praying for you every day, sweetie. I think about you all of the time. Please let us know how things go when you see Dr. C, OK? Sending many, many hugs to you, CMP/MM
Re: Had an app today about my arms/hands problems...
Moldova,
I've never heard of this treatment. I tried doing a web search and still failed to turn up anything. I am not qualified to even have an opinion, other than to recommend that you do your homework.
I strongly urge you to get this doc to provide documentation that describes the procedure, and then do further research based on what you read. In addition, I would ask for references, patients who have received this treatment and can talk to you about it. One more thing - find out in which hospital he does this procedure and call them asking for information about the procedure. If you run across roadblocks or limited info, or the doc is unwilling to provide the info/references, then I'd walk away - fast. If he can support the procedure with info and references, then maybe it's the real deal.
I've been having very bad arm pain too Moldova - I'll start a thread and explain.
Best of Luck and I hope your pain is controlled soon.
Re: Had an app today about my arms/hands problems...
Moldova,
I am so sorry about the arm pain. I truly do understand arm pain and elbow pain. I honestly had never felt pain like that untill I injurded my arm/wrist at work and it took the 4 surgeries to get better. The as you prbably already know I was pain free in the arms when the car accident happened and now I have the neck stuff going on.
I have not heard of this treatment! Does it have a specific name or did I miss that part??
Did you say that a Doc in California is doing this surgery? If so where exactly in Calif. Is it at a university? I know that when my arm-elbow-wrist problems got to the point that is was beyond the experience of any doctor in my area I was sent to U. C. Davis medical center to one of the most renownd Orthopedic Surgeons in the country. Whenever I did research on-line I found his name listed as a source of the information I was reading. He partakes in a lot of surgery.
The Ortho Surgeon I will be seeing for my neck actually knows this doctor because the Ortho for the neck has worked with him before and he also does spinal reseach with U. C. Davis medical center.
I think that a second opinion may be needed. Pick a different docs brain and see what their recomendation is and if they have heard of this new type of treatment your other doc is suggesting. I do know and understand that it can be very scary to undergo a treatment/surgery that is somewhat new and not often done. I did have a surgery that is fairly new that was done on my wrist and I have to say the Ortho from U C Davis was very good and it actually made a huge difference inthe outcome. If it was not available or did not work I would hae had to have metal plates in my wrist basically fusing the wrist joint somewhat.
Now for the elbow it was pretty cut and dry. Ulnar release ot the cubital tunnel.
I would be interested in knowing a bit ore about this treatment. Upper extremity issues are very familar to me and I like to do research on them so maybe we could work together in trying to do some of that. It will help to kee p me busy.
Anyway I hope this all will settle down and a plan will be divised to get things treated properly.
I do know that the surgeries were tough to go through but I have to say the Posterior cervical foraminotomy was even harder then the arm surgeries. Or pretty close! No suregy is fun and thats just that. We have all just been through so much. Please if you ever have any questions or need some extra support please let me know.
Re: Had an app today about my arms/hands problems...
I cherish each of your opinions here - thank you so much!
I definitely will check all what your suggested, Steve, I am very careful about it too.
This Dr's name is Dr. Vad, he is at the Hospital for Special surgery. He is a DR who specializes in sports injures and non-invaisive procedures for spine, arthrities, tennis elbows, etc..
If you don't mind to go and check him out and let me know what do you think - i would really appreciate your opinion. As I said he is at HSS.
I miss you, guys, and I feel for all of you when I read how much pain you are in. I wish I could help you all more with at least an advice, but feel lately like a helpless chicken myself. To have such severe pain from neck to the tip of the toes, being on a lots of pain meds and still not getting any relieve - not fun at all.
Years ago, when I just got my spinal problems, couple of Percocets a day help me so much that I never had to worry about my future. I thought if they have something for me to help with pain - I am going on with my life.
Well, today's situation is very different; despite my LA meds every 8 hours and a lots of BT, my pain is 8-9 all over my body and nothing, I mean nothing helps.
My wonderful PM DR (who I trust and adore) tells me that next step would be Fentanyl patch, but since I hardly survived when I was put on it and only because I was taking to the Hospital on time, he will never try thisone for me again. He doesn't believe that my LA meds have to be increased so often, it's pretty high now.
He says that it very easy to get to the seiling with incresing LA but than what?? One day it will happen if we go up and up in LA... So I stay on his allowance very strictly, but I know that i get less and less help from it. This is what makes me very scary for the future.
Some of us here know that they will get better; let's face it even spinal surgeries go from "mild" ones to a multi-levels fusions and recovery from it is different and sucsess rate for the results are very different too. I am a big optimist by neuture, but I am also very realistic and I know that I will be getting worse, not better due to a lots of complications and other conditions which all of a sudden were discovered during my "recovery" time.
I don't look for miracles, no way! But I want to have something to relieve some pain at least, to go from 8-9 to 6-7 would be nice!!! I want to enjoy my grankids, my family and my friends... I want to attend weddings and other happy occasions even if I have to dance with my cane LOL Who cares? As long as I can get up from bed - I am happy. But right now is tough.
Re: Had an app today about my arms/hands problems...
Quote:
Originally Posted by Moldova
...If you don't mind to go and check him out and let me know what do you think - i would really appreciate your opinion. As I said he is at HSS...
Moldova,
I tried searching using the new info you gave as search criteria and still find nothing on the procedure. Nothing. And I am very good at searching. I'm not saying it's voodoo, I just can't find one shred of evidence of this blood infusion therapy.
Re: Had an app today about my arms/hands problems...
Steve,
this is totally my fault, sorry. Procedure has a name, he told me the name, but just did not stick with me. The only thing I remember he explained what exactly this is: infusion/shots of my own blood into the muscles/ligaments in the elbow.
I tried to do research too but without the exactly name I can't find anything also. I will call tomorrow and ask his assistant, she may know it.
I was told by the DR who reffered me to him that he does a lots of different non invasive procedures for a lot of different Ortho Drs at same Hospital, but this specific one they do only for 2 years (this is new) and it's about 120-150 a month. I don't more than that.
Can't wait to see him, which is next Wednersday and will let you all know what is this all about. I am really exciting to learn something new, but like Steve said I will do a lots of investigation before I go for it. I am not new to a health issues world, so learn a lot in a hard way.
The only thing I can tell you I called my arm/hand specialist locally and told him that I went to HSS and about those treatments, he said that he reads about them more and more, but they don't do it here, it has to be a Dr who has a special training and good results with it to be able to perform them at such Hospital as HSS.
Who knows? I will keep in touch with you to let you know the results.
Re: Had an app today about my arms/hands problems...
Moldova,
After reading the last few posts, I thought I'd check out HSS's site and found written info. and a video about infusion therapy for RA. I don't know if this is what your doc is talking about (it didn't mention specifically what was being infused..... just that there are several types of infusions.) This may be something totally different from what has been suggested to you. It was hard to tell.
I also found a profile for Dr. Vad. He is a physiatrist, which is what my PM doc is too. He seems to be quite well known in his field. I would still do as much research as possible and as someone else mentioned, ask if you can speak with other patients who have had this procedure.
I'm curious to learn what you find out at your appointment. Best of luck with it. I think of you and pray for you every day. Many hugs, CMP/MM
Re: Had an app today about my arms/hands problems...
Hi Moldova - I'm more of a lurker than a poster but I think if you search on Autologous Blood Injection In The Treatment Of Refractory Tennis Elbow you might find some of the information you seek.
Re: Had an app today about my arms/hands problems...
Thus far Mol my PM feels the same, the problems I am having in the shoulders, arms fingers ect are coming from the thoracic & cervical. You sound worse then me & I feel like a baby complaining, I am afraid to end up like you. I have such pain know. I want you to know that I am praying for you & it breaks my heart to read how much pain you are in, I understand how tough it is when you cant use you arms & hands. I am lucky to have what I have after reading your posts. God bless you & I truely hope you find some relief. Please when you feel up to it keep us informed. God bless, Sammy
Re: Had an app today about my arms/hands problems...
CMPGirl,
thank you so much. You obviously found a lot more infor than I did! lol
I will definetily let you know what is this all about. I think you are right: they are different infusions for a different problems. For example I had many years ago gold infusions for my RA. At that time it was very effective treatments and lasted for couple of years. I don't know if they still do that. The one DR Vad is talking about is my own blood infused into the problem area. I will know more after I see him next week and I will let you know word to word about this new area to me. I am sure everybody here would be interested to learn something new available for us.
I am just a lucky girl that I have access to a place like HSS. Everything is what new regarding research, tests, treatments, etc - available there. And Drs there are so knowledgable and they open to try anything to help you. Of course they are just humans and they can't do miracles, but I learn a lot from that place and their stuff.
Stay well and thank you for your support, sweet heart.
Re: Had an app today about my arms/hands problems...
Dear Sammy,
my heart breaks to read what you wrote. Honey, it really doesn't matter who has worse problems: pain is pain and if it hurts you - you are allowed to complain. That is OK...
I feel for you, but please don't think you may end up like me. Don't forget that i have MS and also RA with Fibro... I had 2 spinal multi levels fusions; so I pray and hope that you still may heal. The hardest thing is to have right diagnoses and when they dx you - than you know what to do and how to take care of it.
What did they do for you to check if your spine is OK? Did you have MRI? CT? If yes, what did is show?
Sweet heart, please, hang in there and try to think positive. That is why i hesitate to post all my problems - I don't whant to scare you all. On one hand I want to share and on the other I feel bad if people like Sammy, who already suffers, gets and idea that she may end up like me. NO-NO, don't do it to yourself, honey, please don't! We all are so different, and our problems are different also. The only one thing we have in common is CP and painfull life...
Re: Had an app today about my arms/hands problems...
Quote:
Originally Posted by marnie62
Hi Moldova - I'm more of a lurker than a poster but I think if you search on Autologous Blood Injection In The Treatment Of Refractory Tennis Elbow you might find some of the information you seek.
best of luck
Marnie
Marnie, you may be on a money!!!! I will do it today and I think you got something here...
Thank you so much for your help!
Why don't you post? We would like to have you here and maybe by talking to us - you would get some relieve too? Obviously if you came to this board - you have some type of problem. We are here for you, honey, to support and help as much as we can...
Re: Had an app today about my arms/hands problems...
thanks for the kind thoughts - this board moves so fast that by the time I've seen posts the answers already been found - which is great. I live in Australia so the time difference adds even more delay.
I have osteoarthritis of spine - lumbar to cervical with several levels of nerve root compression. Lots here on the board have similar I've noticied. I've just tapered off oxy and gabapentin through my pain management clinic... and once I got through the withdrawal they gave lots of help with functionality/ distraction techniques and how to do activities using pacing. The pain levels haven't changed, still high, but with the help I was given my emotional response to the pain has lessened - which has helped me manage better. I couldn't keep living my life on medication and needed to find alternatives.
My motto one hour, one task, one day at a time
Re: Had an app today about my arms/hands problems...
Hey Moldova,
I just went and typed in what Marnie suggested for a search and came up with some interesting information.
Many many times I have done research for different things that were wrong with me! ...LOL
This little tid bit was quite interesting:
Well I had put something from the actual text here but then erased it because I am not sure we can do that so I will try to explain.
The artical was speaking of tennis elbow omong some other issues not so much being an inflammatory process but more of a fribrolastic (i think is the word they used) issue. I believe what this means is yes there is an inflammatory issue but it is more of an issue with the histopathologiacal make up of your muscels or tendons. Histopathological I believe means tissue pathology. The injection I believe is done to try and promote a healing process of the tissues that are the problem. I also noticed in there the mention of being able to get the injection in the right place.
In the case of my own elbow I now wonder why I was never offered such a thing. Although my elbow was considered to be Tennis Elbow in the begining I as a patient did much research on tennis elbow and although some of my symptoms were similar I felt deep down in side there was a larger pic not yet uncovered by my docotors. In the end after doing a lot of reseach I figured out on my own that I fit into the category of havign a trapped Ulnar nerve at the cubital tunnel. I had to persist and persist to get the doctors to listen to me about the buring pain etc I was having there.
FINALLY...they listened and did further testing and realizd the Ulnar nerve was trapped there and the diagnosis was Cubital tunnel syndrome. You can got this simply form always putting your elbows on the table among some other ways. Mine was because of all the casting from all the wrist surgeries. I could always feel my elbow pressing on the cast. At one point after the larges of the wrist surgeries, my entire arm was burning and numb. It was in a long arm cast up to my arm pit. I would walk around with the cast resting on my head because it would relieve just a little of the pressure the cast was causing on my elbow. In the end of everything it was found that repeated long arm casting was the cause of the Cubital Tunnel - Ulnar nerve entrapment. The fix was yet the 4th arm surgery for me. They took the nerve from the area at the back of the elbow and moved it to a place where it is less likely to be compressed. It now sits on the inside to top of the crease of the arm. So when I bump my left elbow I no longer have the "funny Bone" feeling which is actually caused from dinging the Ulnar nerve.
In your case have they done any MRI or EMG on the elbow? Have you sponken with any other doctor for a second opinion about the pain and issues your having with the hands and elbows? The treatment I just read about if it is the same as your doctor is sugessting is quite interesting, but if it were me I would want to make sure that I know as much as I can about it.
How long it has been around --see if another doc would suggest the same thing.
All in all I am just so sorry that your dealing with this. It is very painful to have pain there. I can remember back when I was going through this and my friends would just look at me like I was insane and say, "how can an arm cause you that much pain?" Just total ingnorance on some peoples part. These kinds of people are so oblivious to what goes on I hopwe the docs office will give you the name so you can research more so that you will feel more confident in your medical decision making. SOmetimes treatments sound so weird but for some they really honestly work!
Have a good day today Moldova and hang in there! I am praying for you
Re: Had an app today about my arms/hands problems...
Chrissy,
thank you for your research - you saved me tons of time!
I really appreciate your time.
I had MRI done; ex-rays are good only if you broke your bone, they are useless in something like this.
I saw yesterday my Rheumotologist and she was shocked (new dR) the way all my joints and soft tissue are looking and the amount of inflammation. I have to start my RA treatments next week. I look forward to them since she promissed I will have at least 35% less pain and inflammation than I have now.
She doesn't want me to go through any surgeries or treatments until I will be done with my chemo therapy and shots once a week and she will see I am doing better. All surgeries or treatments will be useless in such inflammed body like mine due to RA. So I had to cxl my app with DR Vad for next week until I will be done with treatments. I know I will be very sick, I will loose a lots of my hair, but if it will help my pain all over my body - I will be the happiest person on earth. It will not help my spinal and damaged nerves issues though.
I leave an hour aways from HSS and have access to such wonderful Hospital where they have newest research, knowlegable DRs, they are very into everyting new and they don't hesitate to offer it to their patients.
But what I like is they stand by all they do. This blood infusions are relatively new (couple of years by now) and it was discovered in CA. Dr Vad was trained at CA and had a lots of training before they offered it to people at HSS.
My Rheumotologist knows about those treatments and she is all up to it, but not for me at this point.
I am very sorry I will not be able to let you all know about this matter now like I promised, but I will later... And what if I will do so well after treatments that i will not need any treatments anymore or surgery???? Wishful thinking, but who knows?
Re: Had an app today about my arms/hands problems...
Hey Mol,
Sorry to hear about the Chemo treatments. I have a real close girlfriend of mine and she has Necrotizing vasculitis. Right now she is doing Chemo as well. She was doing it every month and then was off for 90 days and on the first Monday of September she will start back up again.
She is the only one of my friends who actually understands chronic pain in its entirity. Just before she was diagnosed with the vasculitis she had a problem with one of her heart valves. She is the same age as me 38. She is lucky to be married to a wonderful supportive hubby. Anyway when she was a young girl she had rhuematic(SP) fever and it damaged one of her heart valves. So she knew eventually she would have to have it fixed. What she did not know was that this other thing...the vasculitis...was going to reek havoc all over her body and cause severe nerve damage in her feet.
Anyway...back to you. SO was this treatment discovered by a doc in Californina at the U C davis medical center? If you don't know no biggie. I only ask because when I went through all the stuff with my wrist and elbow I was eventually transferred to a specialist at the U C Davis medical center. He is a renown Dr. in orthopedics specializing in the upper extremity. He actually as far as I am concerned got me back to health and on my way to normal life again. I was pain free and had good ROM in my hand and wrist.
Thats when the car accident happened and I traded the arm injury for the neck. But my point is that this Doctor was really awesome. His name is Dr. Szaboand I found his name attached to a lot of research associated with the upper extremity. SO if your researching anything see if you find his name anywhere.
How are you today??? What is HSS? Is it a big teaching hopital full of research and etc?? I think those are the best places to get treatments because the Doctors there seem to want to help and get to the bottom of things.
When I was being treated for my arm injuries at U C Davis it was always a TEAM of doctors on my case. I can remember the first surgery I had with this group and I swear about 6 different docs were present at the surgery. They did a great job!!
Hope your feeling better today. When I was dealing with the elbow pain I tired this while sleeping to aleviate some of the burning pain. I took a thick dish towel and wrapped it around the elbow to help keep it straight. I duck-tapped it on so it would stay on but not so tight it could cut circulation. it basically was just to keep the elbow from bending at night. If you go on-line you may see this someplace as a treatment in helping with the tennis elbow!
Re: Had an app today about my arms/hands problems...
Moldova, I am happy you have hope, as I have said before (I think) my PM feels the same the sympoms are coming from the cervical & thoracic. I know how it feels not to be able to even pull you pants down or reach for the roll of TP, had my daughter undo & pull my pants down a couple days ago. I have been wearing alot of dresses or skirts, lol.
I want you to know I think about you all the time & I hope you do not take this the wrong way but I worry sick that I will be in your shoes. We have so many of the same symptoms & the pain gets so nasty in additon to the rib/chest pain I wonder if I got like you could I make it, you know. This treatment sounds hopeful & I am praying you get relief. I just cant imagine any doctor leaving some one in so much pain that they cant even lay in bed. I went through that last night & as I said you will are in my thoughts ofter & I hope I have have the strength & courage that you have.
I wanted to let you know that it sounds like our doctors are on the same page as to where the problems are coming from & please let me know it you find out anything specifiv & I will do the same for you. I went through the ESIs once again along with the ribs injected but I am just in to much pain to tell if it will help at this point & trying to be patient to see if it will improve. The C & T1 were done, I have a feeling I will be getting more. God bless & I will be thinking of you, Sammy
