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Post by Leofwen on Nov 26, 2013 15:23:30 GMT -6
Hi all
This us a bit of a strange post as I seem to be a minority here. I have schwannoma at L5/S1, which may actually be a Neurofibroma. I have symptoms and they are getting progressively worse and have been for the last 9 months. I have been told my tumour is too high risk to remove and whilst surgery is inevitable, they do not want to remove it until my symptoms equal the risk.
I must admit that I have sever pain sometimes and persistent nagging pain in my lower spine around the tumour site. Due to where it is I also have stenosis which affects my mobility. I now have degenerative changes in my neck and have terrible neck pain. I know there is nothing sinister there as I have had MRI to check. But it is just another thing to deal with!
I feel caught between a rock and a hard place and worry constantly about how bad I need to get before surgery becomes viable. The future feels very frightening at times as I am so afraid of losing my independence and dignity. Good Neurosurgeons with experience of schwannomas are thin on the ground in the Uk. They take a more conservative approach here than in the Us and Australia and NZ by reading posts on the forum.
I am getting to the point where I think a dropped foot would be better than living this half life. Even moderate activity causes me severe pain followed by overwhelming fatigue. It is difficult to committ to anything socially and I don't enjoy going out anymore as I feel so knackered all the time. I am having a bad week and feel alone with my dilemma.
And words of wisdom , advice very welcome. If you have had a similar journey I would love to hear from you especially if you have some advice on what would trigger surgery. My concern is that symptomatic schwannoma are generally respected, and asymptomatic are left and monitored.
S x
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Post by Leofwen on Nov 27, 2013 8:46:41 GMT -6
In my last paragraph I meant symptomatic schwannoma sure usually re-sect end, not respected! Lol
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Post by Leofwen on Nov 27, 2013 8:47:39 GMT -6
Still got it wrong- it's the drugs!
Re-sected, not Respected!
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Post by lw on Dec 3, 2013 9:49:42 GMT -6
Respected??? I certainly don't respect mine!!
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Post by guest on Jul 5, 2014 12:52:45 GMT -6
have you gotten a second opinion? Also, have you sought an examination at a top spine center? That can really matter. Spine surgeries often have low enough success rates that it is one surgery people go only to top spine hospitals for. I suggest you try that. It made a big difference in my treatment. I don't know where you are but you want a spine center of the same caliber of the Hospital of Special Surgery in NYC. There are magazines that publish lists of the top hospitals in various fields - look it up and see what is close to you. Can sometimes get your insurance to cover because of risk of having surgery elsewhere
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Post by batman6561 on Jan 1, 2015 23:43:05 GMT -6
That's what I've been told not very big about 7x7mm at L2-3. Troubling since 2009.Im now 53 years old and I feel Like I'm in prison sometimes with all the meds I'm on. I have another post explaining all the meds but left out 600mg of gabapentin four times a day. This is the worse makes me very dizzy but it does help a little. They told me it was inoperable because of it's size and how many nerves going through it. Ohio is so strict on meds, that's good and bad it still punishes those of us that need it for pain. I'm a little scared of having to be on it for a long time. It stopped growing for now but for how long. Did anyone have a tumor that stopped then started growing again?
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Post by Blessed on Feb 4, 2015 18:12:51 GMT -6
Hi, in response to Leofwen. I live in Manchester UK and I had a schwannoma removed from my spinal chord at T5. They had no choice but to operate as I had no previous knowledge of the Schw but I lost use in my left leg and arm resulting in surgery. I am under the Care of the Nuerofibromitosis Research Centre NF1 and Nf2 in Manchester there is also a branch in Oxford. These guys are the experts in Schwannoma research and they have outstanding neurosurgeons. I was warned I would never walk again after my surgery but thanks to PRof Alan Hewitt and his team at Salford Royal my op was very successful. I would strongly recommend you get a referral to Prof Gareth Evans at the research centre check it out online they will answer any enquiries and tell you how to get a referral. The location may mean some travelling but there are schemes to assist if cost is a problem. They work closely with the Spinal Unit at Salford Royal and I can fully recommend them. Good luck
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Post by Nina on Feb 20, 2015 20:54:30 GMT -6
I advise you to get your tumor out your symptoms will get worse and worse and you're not going to recover so easily if it sits there for years
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Post by Anonymous on Apr 14, 2016 21:31:22 GMT -6
Wow. We seem to have a very similar case and I can relate to how you are feeling tremendously.....although, In 2012 (I was 17) I had surgery in order to remove this tumor (or so I thought) by some of the best of the best doctors. Since then I have been to several doctors because the pain had came back and progressed in a matter of time..all said there was nothing they could do... Then a doctor I went to a few months ago did a new MRI scan and also requested my surgical report to review..... Turns out it was never removed in 2012 and I never knew that. They went into operate and had decided the only thing they could do was shave some bone area to basically give the tumor some room to grow and be less inflamed. The tumor was in my sciatic nerve and they say there was absolutely nothing they could do. That Doctor that revealed that information to me was the last Doctor I saw.... His response was the same as every one of the doctors before.... "Your 18 and have a life ahead of you, if we were to operate the risk outweighs the benefit and you will at least lose mobility of your foot." "You've tried everything, now the only thing left is narcotics." I refuse to settle for that answer and spend 80 years on medications that will suck the life out of me. I'm in the same boat as you. I don't want to say I'm praying something happens to me, but I'm not sure how much longer I can take this pain for. It's only been 4 years of chronic pain, I can't do 70 more of this. I guess the only option we have is to wait on technology to catch up with this diagnosis. Although; i have seen where there are trials going on at the Mayo Clinic in the US here in Florida, and they have created a nerve conduit. So, although if you were to have to have some mobility loss due to nerve loss around the tumor (or just like me with them having to remove my entire sciatic nerve if they were to perform surgery) it would only be temporary! These nerve conduits regenerate nerve growth, since our nerves are not capable of doing that after they have been damaged. So after your affected nerve that the tumor is putting pressure on is removed; the conduit takes its place and voids the spot. It would just take some physical therapy time to get back to normal. It is risky. But if you are like me, you feel like you would do anything to get this pain to stop. I am keeping my eyes on the trials and hope that they continue to improve. At least be thankful you don't have a 6 inch scar for a surgery that took place 4 years ago that turned out to be pointless. It's very embarrassing, and I have several people in the past that think it is my butt crack when I bend over. That's how bad it is! Lol.
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Post by Daniel on Apr 25, 2016 13:12:40 GMT -6
I am glad l found this site, l also have a schwannoma tumor at L3/4 in addition to this l have a disc bulge at at L5/S1 which is giving me terrible pains down my legs and ankles as well as my lower back.
A few days ago l attended an appointment with my consultant at a uk hospital.
I thought that we were there to discuss a possible operation that would relieve the nerve pain down my legs but what shocked me was that the latest MRI results had shown that the schwannoma had grown another 4mm in nine months and l now have to be referred to a neurosurgeon.
I thought that l was going to get some relief from this terrible pain in my legs but they have refused surgery to the disk bulge saying it is too risky, l am now wondering if l have cancer and not a schwannoma as l have never had a biopsy and this thing is getting much bigger.
I am really scared and feel very deflated.
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