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Tiered of so much pain but afraid to have surgery again

freeindeed2006ffreeindeed2006 Posts: 2
edited 08/11/2014 - 10:09 AM in Chronic Pain
I have had 3 back surgeries now. First was to mend a ruptured disc near the tail bone. 3 weeks after surgery was in a car accident so had to have it redone as it reruptured. The 3 surgery occurred 1 yr later when 2 levels collapsed and I ended up with a fusion, titanium cages and screws. It was a horrible surgery with a lot of blood loss, and I died and was revived because I would stop breathing. Little did we know at that time I had severe sleep apnea from the narcotics needed to control the pain.

1 month after this surgery I ruptured another disc and dr wanted to do surgery again. I declined. Since then ( 8 yrs ago) I have developed 12 ruptured and or collapsed disc & severe scoliosis, bone spurs, arthritis, degenerative disc disease, and a list of more that I don't remember. Dr wants to put a rod down half my spine and has told me I can never be fixed only helped. Not want I wanted to hear but I understand why. He said this will more then likely go all the way up my spine in time.

Now I am having severe pain that goes into the vaginal area accompanied with pain in the buttocks and inner thighs. It becomes severe if I stand or sit too long , walk up and down steps a lot or am up doing house work for any length of time. I get severe pain down both legs with driving, and or prolonged sitting.

I have also developed severe pain in my neck, shoulders and knees. I had to have foot surgery 2 years ago in which the dr did not do it right, so I limp from the pain. That has thrown my walk off and increases back pain.

The last surgery also damaged the lymph nodes behind my knees so I also have developed Lymphedema. As a result I have to sleep with my feet and legs elevated on 3 pillows every night to keep swelling down and it also helps the shooting pain I get from my back when I lie down. Therefore I can only sleep in one position now for the past 8 years. I awake a lot through the night from pain, and sleep apnea so never feel rested even though I use a CPAP machine.

Other then that, I have been diagnosed with fibromyalgia for last 30 years, Interstitial cystitis and irritable bowel and severe joint pain in my hips, knees, neck, shoulders, and fingers which dr is not sure why I am having this.

Other then treating the pain, I have elected not to do anything else, mostly because I cannot afford to now since I went through a divorce and my income dropped drastically. I am having a hard time working as I struggle with memory issues and pain.

I need help but don't know where to turn or what to do first. I am mostly concerned about the pain in the vaginal area, because I know I can loose bowel and or bladder functions any time now as the nerves to that area are being compressed. How serious is this pain and is it connected to the nerves to the bowel and bladder?

Can you comment of this and also where does someone with so many issues start? I am thinking about moving which will require all new doctors which scares me because they send you to so many to be evaluated and they always treat me as if I am there for drugs. I want off drugs!!



Tiered of pain in Ohio
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Comments

  • MetalneckMetalneck The Island of Misfit toysPosts: 1,617
    up to 6 or 7 with more to ..... Moving also ..... we have our scars!! The docs will be ok ... I hope!
    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)
    My Story  - Click below
    http://www.spine-health.com/forum/discussion/44804/pain/neck-pain-cervical/long-and-winding-road
    I am not a doctor nor have I ever played one on TV.  Therefore any comments made are based on my experience.
  • SunnyStacySSunnyStacy Posts: 5
    edited 08/12/2014 - 11:32 AM
    You have been run through the ringer. I am so sorry you have gone through all of this. I have been offered neck surgery. I went to the neurologist. He told me it was 30/30/30. I also have fibro and nerve damage in my arms and hands. He told me 30% get better, 30% stay the same and 30% get worse. And he had no way of knowing if it would help the nerve pain in my arms or not. I have struggled with this decision for 5 years. When my lower back started hurting I had shots, RFA. It helped for awhile. I just had right facet joint injections and an SI joint injection 2 weeks ago. I too have that sciatica pain in the inner thigh, groin area on and off. If I would be at risk of affecting bowel/bladder control, I believe I would have to do it. I have had disc decompression, an SCS for neck and arms but it only helps my arms. I have not had the surgeries that you have had though. I have the sciatica pain, pain in my legs and top of my feet numb like and my lower back aches. I have tried to avoid fusion in my neck especially with only a 30% chance of success. Even 50/50 I might consider it. I guess if you think it's going to affect your bowl/bladder control, I don't think I would want to wait on that. We have enough going on with what we deal with without adding that issue to our lives. But only you can make that decision. I sure wish you all the best and am sorry you have to make yet another decision about surgery..hang in there..:)
    Herniated disc c4-7, cervical radiculopathy, DDD, herniated lumbar disc, Fibromyalgia, blood pressure, hypothyroidism, SCS since 10/10, RLS, sciatica, discogram, RFA lumbar, oodles of cervical epidurals, trigger point injections, physical therapy
  • Freeindeed2006 you have sure been through a lot :( and I am sorry you have suffered so long in pain. I also have had multiple spine surgeries and after the L3-4-5S1 fusion I never wanted to experience anything even remotely like that surgery. It was close to 2 years before I started to feel somewhat better. Just recently had C4-5-6 fusion and compared to the lower spine fusion, had been a different recovery. Each day seems to be a little better.

    I try to maintain pain control through a Neurontin (Gabapentin), arthritis water exercises, acupuncture and regular massage. Also try to walk each day. I hope you are able to maintain without the aggressive surgery. Maybe you could get a second opinion from another neurosurgeon just to see if there are alternatives.

    Best wishes for some relief in your symptoms.
  • New pain, numbness, tingling, in the buttocks, inner thighs, vaginal area etc needs to be followed up with by a board certified spine surgeon.
    You need to be examined and to have the surgeon be aware of your increased/new symptoms.

    http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-message-resource

    http://www.spine-health.com/conditions/lower-back-pain/cauda-equina-syndrome
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