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mary505
@mary505

Posts: 5
Joined: Aug 13, 2018

Tingling in arms and legs - will this get worse? Can I still function?

Posted by @mary505, Sun, Aug 12 9:51pm

My symptoms began a year and a half ago. I had Sciatica pain, foot drop and foot tingling – all on left side. Physical therapy greatly improved the foot drop and pain was gone after 2 months. But tingling has spread – it's now in both hands, arms, legs and feet.

MRIs have shown I have disc degeneration and herniated discs in both neck and lower back. Before the arms started tingling, I had seen surgeon who recommended surgery. I have not done that and I'm concerned about permanent nerve damage. Will this get worse? Will that prevent me from doing normal things – like driving or holding things?

Thank you for any information you can provide!

REPLY

Hello @mary505 . Please, before you consider anything done for your condition make sure you try all the alternatives possible. No steroid or nerve block injections, no good, they don’t cure anything.
Good look to you !!!

I suggest you try platelets lysate injections first

Liked by marystefy, mary505

@mary505

First, welcome to the forums. I am new to this myself and, in a short time, have found that the people here are very supportive, caring, and encouraging.

I am sorry to hear about what you're going (through). While I have no way of knowing what will happen regarding your condition, I do get a sense of how this is affecting you. I started to experience intermittent burning/tingling sensations in my feet last month. It negatively impacted my eating and sleeping. I was a mess. The mental battle was the worst part. I sought help from a therapist to deal with the worry/anxiety. Frankly, the worry physically and mentally drained me. I have, for the most part, reached a point where I have accepted the situation. The worry is still there and does affect me at times, but not as bad as it did 30 days ago.

You didn't mention how your experience is impacting your life other than physically. If you are dealing with issues regarding worry/anxiety or this is having a negative effect on your life in other areas I would highly suggest seeking help from a therapist or your doctor. It's not easy to wait to see a doctor, run the tests, get a diagnosis, and then see what can be done to resolve the problem (if possible). As Tom Petty sang, "The waiting is the hardest part." It's handling the time while waiting that can be very hard.

There is a member of the forum named John that I've found to be extremely helpful. He tells people to learn what they can about their condition and be their own advocate. I'm sorry if I wasn't helpful regarding your medical condition, but hope I was of some assistance if it's been bothering you in other ways.

@sinjin

@mary505

First, welcome to the forums. I am new to this myself and, in a short time, have found that the people here are very supportive, caring, and encouraging.

I am sorry to hear about what you're going (through). While I have no way of knowing what will happen regarding your condition, I do get a sense of how this is affecting you. I started to experience intermittent burning/tingling sensations in my feet last month. It negatively impacted my eating and sleeping. I was a mess. The mental battle was the worst part. I sought help from a therapist to deal with the worry/anxiety. Frankly, the worry physically and mentally drained me. I have, for the most part, reached a point where I have accepted the situation. The worry is still there and does affect me at times, but not as bad as it did 30 days ago.

You didn't mention how your experience is impacting your life other than physically. If you are dealing with issues regarding worry/anxiety or this is having a negative effect on your life in other areas I would highly suggest seeking help from a therapist or your doctor. It's not easy to wait to see a doctor, run the tests, get a diagnosis, and then see what can be done to resolve the problem (if possible). As Tom Petty sang, "The waiting is the hardest part." It's handling the time while waiting that can be very hard.

There is a member of the forum named John that I've found to be extremely helpful. He tells people to learn what they can about their condition and be their own advocate. I'm sorry if I wasn't helpful regarding your medical condition, but hope I was of some assistance if it's been bothering you in other ways.

Jump to this post

Thank you for your reply. This condition has sort of taken over my life. I am concerned that if this progresses to permanent nerve damage that I’ll lose ability to perform basic functions. But don’t know where to turn next to get more info/help.

I don’t think I need therapy, but will keep that in mind. Just looking for next steps. I have been going to clinic that is using traction, PT, Chiro adjustments but no improvement after 2 months.

Have been told to go to PT that specializes in neurology. May try that next. But wondered if there were other recommendations?

@marinelastef

Hello @mary505 . Please, before you consider anything done for your condition make sure you try all the alternatives possible. No steroid or nerve block injections, no good, they don’t cure anything.
Good look to you !!!

Jump to this post

Thank you. I'm trying to learn what the alternatives are…..

Liked by marystefy

@nkhan1958

I suggest you try platelets lysate injections first

Jump to this post

Thank you. I've never heard of this but will certainly look into it!

Liked by marystefy

Hi you stated that a surgeon said you needed surgery. I can only speak from experience, so if you are worried about getting worse go get a second opinion for surgery. I had 2 neck surgeries and if I could do it all over again I would not have waited for the 2nd. I have nerve damage so bad in my arms n hands, its horrible. I would get a 2nd opinion about the surgery and go from there. Don't wait.

Hi @mary505,
Welcome to Connect. I am happy to see that others have responded to your post and shared their health experience and suggestions. I can understand your fears about will it get worse. It's a normal reaction to an uncertain future. As a volunteer mentor with no medical training or background, myself and others can't offer medical advice. We can share our own personal experiences and treatments that have worked for us.

I agree with @sdemaria that if a surgeon said you needed surgery to fix it and you are worried it's going to get worse if you don't do something that helps, why not seek a second opinion for the surgery or from another neurologist. I don't think anyone likes or wants surgery but sometimes it is the last option on the table and it would be good to either rule it out or confirm that is what is needed.

I'm glad you shared your post on Connect and asked questions. It's one of the first steps in learning to be your own advocate. The more you know about your health, the better questions you ask your doctor which hopefully will help provide a better treatment plan.

Hoping you find some answers soon.

John

Thanks John, I was a victim of my first neck surgery. I had a screw sticking out and the surgeon told me it was phantom pain. Finally, I went to 2nd surgeon and found this out. I now suffer from pain everyday in my arms n hands n fingers. But my neck shoulders n head are pain free. So I highly recommend she gets a 2nd opinion.

@johnbishop

Hi @mary505,
Welcome to Connect. I am happy to see that others have responded to your post and shared their health experience and suggestions. I can understand your fears about will it get worse. It's a normal reaction to an uncertain future. As a volunteer mentor with no medical training or background, myself and others can't offer medical advice. We can share our own personal experiences and treatments that have worked for us.

I agree with @sdemaria that if a surgeon said you needed surgery to fix it and you are worried it's going to get worse if you don't do something that helps, why not seek a second opinion for the surgery or from another neurologist. I don't think anyone likes or wants surgery but sometimes it is the last option on the table and it would be good to either rule it out or confirm that is what is needed.

I'm glad you shared your post on Connect and asked questions. It's one of the first steps in learning to be your own advocate. The more you know about your health, the better questions you ask your doctor which hopefully will help provide a better treatment plan.

Hoping you find some answers soon.

John

Jump to this post

Thank you, John

Hello Mary,

Certainly agree that you should get a second opinion on surgery. However, stenosis surgery has improved dramatically so it is common not to have a fusion with it. I had a 5 hour stenosis surgery on my lower back fixing stenosis in both the facet joints and my central spine and the recovery was really easy and it made it so I could walk again. Additionally, 4 fiends have had both cervical and lower back stenosis surgeries which worked great, removed the pain and all four were back to work in two weeks. I put off back surgery for decades, but no longer fear some back surgeries. Be sure that your surgeon only does back surgeries and is up on the latest techniques.

That being said, as far as your concern about where your neuropathy is going to go and how it will affect you, I have a couple comments. First, keep working on finding a cause because if you get a diagnosis you will know the likely course. However, if you are like me and have idiopathic neuropathy so the cause is currently unknown, then you need to pursue symptom relief. This can be a range of medications, IVIG is the only one that can actually reverse symptoms. Nerve stimulators and pain med pumps can come in if it is really bad. Second, the time you are worrying is kind of wasted worry. The neuropathy will progress as it will and you have a lot of adaptation and coping mechanisms. When the neuropathic pain first move to my hands, face and head (It had slowly progressed in my feet and legs for years before this happened) I said that I would kill myself if this is permanent. The fact is they are both much worse but through meditation and mindfulness, I have come to peace with it which I find to be a much more productive way to deal with the unknown progression. There are many apps out there (Headspace and calm) and CDs (Full Catastrophe Living, John Kabat-Zinn, Tich Nat Hahn, Pema Chodren and many others). Meditation really helps more than most medications.

Mark

@sdemaria

Hi you stated that a surgeon said you needed surgery. I can only speak from experience, so if you are worried about getting worse go get a second opinion for surgery. I had 2 neck surgeries and if I could do it all over again I would not have waited for the 2nd. I have nerve damage so bad in my arms n hands, its horrible. I would get a 2nd opinion about the surgery and go from there. Don't wait.

Jump to this post

sdemaria, sinjin, arcticmark, mary505, and others who are at the point of considering neck surgery to relieve pain in arms and hands. My advice is to not wait if the MRI and other tests indicate severe pressure on the nerves. The pain in my arms had increased so that I could not sleep and often just sat on the edge of the bed and sobbed. I believed at the time that surgery wasn't a magic fix and had made a vow to not go that route ever again. However, I did go visit my orthopedic surgeon who had done the delta reverse on my shoulder, because I trust him. He took me to his cervical surgeon and the two of them consulted. They felt that my situation was at the crisis stage. To wait would mean that the nerves would be damaged to the extent that they would probably never recover. They were absolutely right and I am glad I consented to immediate surgery. Some of the damaged nerves have slowly recovered and stopped creating so much pain. Others, however, were already so damaged that they would not be able to heal within my lifetime but could get a little bit better. Nerves are not like bones….they take a long time to recover. The bottom line is that after the 3 months of recuperation in one of those neck braces, my pain relief was about 75% and I no longer sat on the edge of the bed at night planning my demise. I struggle with the neuropathy but if I had waited any longer it would have been so much worse. (And I only threw that darn neck brace across the room once.)

@nkhan1958

I suggest you try platelets lysate injections first

Jump to this post

Go to You Tube and check on Platelets Lysate. There are many clinics in the US claiming to be experts in this kind of treatment. However, the one that pioneered this treatment is Centeno-Schultz Clinic in Colorado. In my view it will be appropriate to do your own search about the efficacy of Platelet Lysate Injections before opting for surgery, which should be used as the last resort.

Mary,
I'm responding because I have lived with all these same symptoms so I will relay my experience. It will be beneficial to get several opinions and if you haven't been seen at Mayo, I highly recommend it. That is where I had my surgery for cervical stenosis, and all of my symptoms were resolved by my surgery.
It was about 3 years from my first symptom (ankle pain when I turned my head) to my surgery when I had many more symptoms. I had a whiplash 20 years ago and had foot drop back then which resolved, by this returned again when my spine issues began years later. I also have thoracic outlet syndrome (TOS) which causes arm pain and weakness. I was in physical therapy for TOS when my spine symptoms started. Muscle spasms were moving my neck vertebrae around which would increase pressure on my spinal cord and I would get foot drop intermittently. When my therapist worked on me and treated the spasms and gently nudged things back where they should be, I walked normally again. The level of my bad disc would cause arm pain as well as the TOS. I had a compressed spinal cord, and spasms that twisted, tilted and turned my vertebrae increased all my symptoms. I was turned down by 5 surgeons who misunderstood my case before I came to Mayo over 2 years time. During that time, my pain increased and was everywhere in my body. It got bad enough that if I bent my neck, I sent an electric bolt pain down my entire body. I lost about 50% of muscle mass in my arms and shoulders and was getting sharper stabbing pain beyond the tingling and pins and needles. I had places that were getting numb. I could see on my MRIs that in 9 months time, the bone spurs had doubled in size with all of it pressing into my spinal cord in my neck. I was loosing the ability to hold my arms up. Driving was very painful and fatiguing and it sent sharp pain down my arms. I am an artist and was loosing the ability to hold my arms up and loosing the coordination in my hands. My wonderful Mayo surgeon saved my ability to work as a fine artist, and to thank him, I painted his portrait as a gift. It was really for both of us and I could prove to myself that I was regaining my ability, and it was to thank him for the gifts he returned to me. I am 20 months post op now, and my lost muscles are slowing coming back with my progress in physical therapy and exercise. It is a slow recovery and for me this was life changing. I suggest you track your symptoms in dated diagrams and journals so you will know if they change. You can develop permanent damage and disability with spine problems. In general, an earlier intervention is better for your recovery, but only a surgeon could answer that for your specific case. Choose your surgeon carefully. I would recommend getting other opinions now and learning about your options. If you wait, you may find yourself with urgent surgery and no time to get other opinions if you suddenly got worse. The last surgeon I saw prior to Mayo wasted 6 months getting tests, and then decided not to help me. I came to Mayo and had an offer for surgical help in a week. I've had a great recovery and regard my surgeon highly. If I should I ever need spine surgery again, I will come back to Mayo. You may need to advocate for yourself for imaging to track the progression of your symptoms which are warranted if you are getting worse. I hope all that information helps in your journey. I did everything I could to have a great outcome before and after surgery and it was very successful. I'm not back to 100% strength yet, but I am making great progress and doing my paintings again.

@jenniferhunter

Mary,
I'm responding because I have lived with all these same symptoms so I will relay my experience. It will be beneficial to get several opinions and if you haven't been seen at Mayo, I highly recommend it. That is where I had my surgery for cervical stenosis, and all of my symptoms were resolved by my surgery.
It was about 3 years from my first symptom (ankle pain when I turned my head) to my surgery when I had many more symptoms. I had a whiplash 20 years ago and had foot drop back then which resolved, by this returned again when my spine issues began years later. I also have thoracic outlet syndrome (TOS) which causes arm pain and weakness. I was in physical therapy for TOS when my spine symptoms started. Muscle spasms were moving my neck vertebrae around which would increase pressure on my spinal cord and I would get foot drop intermittently. When my therapist worked on me and treated the spasms and gently nudged things back where they should be, I walked normally again. The level of my bad disc would cause arm pain as well as the TOS. I had a compressed spinal cord, and spasms that twisted, tilted and turned my vertebrae increased all my symptoms. I was turned down by 5 surgeons who misunderstood my case before I came to Mayo over 2 years time. During that time, my pain increased and was everywhere in my body. It got bad enough that if I bent my neck, I sent an electric bolt pain down my entire body. I lost about 50% of muscle mass in my arms and shoulders and was getting sharper stabbing pain beyond the tingling and pins and needles. I had places that were getting numb. I could see on my MRIs that in 9 months time, the bone spurs had doubled in size with all of it pressing into my spinal cord in my neck. I was loosing the ability to hold my arms up. Driving was very painful and fatiguing and it sent sharp pain down my arms. I am an artist and was loosing the ability to hold my arms up and loosing the coordination in my hands. My wonderful Mayo surgeon saved my ability to work as a fine artist, and to thank him, I painted his portrait as a gift. It was really for both of us and I could prove to myself that I was regaining my ability, and it was to thank him for the gifts he returned to me. I am 20 months post op now, and my lost muscles are slowing coming back with my progress in physical therapy and exercise. It is a slow recovery and for me this was life changing. I suggest you track your symptoms in dated diagrams and journals so you will know if they change. You can develop permanent damage and disability with spine problems. In general, an earlier intervention is better for your recovery, but only a surgeon could answer that for your specific case. Choose your surgeon carefully. I would recommend getting other opinions now and learning about your options. If you wait, you may find yourself with urgent surgery and no time to get other opinions if you suddenly got worse. The last surgeon I saw prior to Mayo wasted 6 months getting tests, and then decided not to help me. I came to Mayo and had an offer for surgical help in a week. I've had a great recovery and regard my surgeon highly. If I should I ever need spine surgery again, I will come back to Mayo. You may need to advocate for yourself for imaging to track the progression of your symptoms which are warranted if you are getting worse. I hope all that information helps in your journey. I did everything I could to have a great outcome before and after surgery and it was very successful. I'm not back to 100% strength yet, but I am making great progress and doing my paintings again.

Jump to this post

If you're curious, you can find out more about about the portrait of my surgeon in the Art for Healing discussion in the Just Want to Talk Group. I was asked to post it and there is more about that story.

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