Daily severe headaches/botched spinal surgery

Hi
I also have headaches all day every day, starting as bearable when I get up and increasing during the day until I can hardly open my eyes in the evenings. My vision gets blurred as the day goes on and sitting agravates it. Going from sitting to standing is awful as I get a huge surge in pain for a short period.


I have undergone all sorts of tests. My headaches started after spinal surgery in Tarragona, Spain that went wrong leaving me with a huge csf leak. The leak site was repaired in further surgery during which I contracted meningitis in theatre. The leak site then burst open again and I had another huge csf leak. Again further surgery to repair the leak. They claim this worked however after three months I returned home to have another severe headache that grew and grew and at the same time I large liquid filled lump developed in the scar site on my back. I believe that this was another csf leak but did not leave my body as the scar had healed up.


I had a series of scans 12 hours apart for 72 hours after they had inserted dye into the csf to see if and where it was leaking. This came back with a probably leak. A hospital in Barcelona attempted a blood patch but were unsuccessful due to scar tissue. This was a very traumatic experience.


I then managed to get accepted by the top team of europe in London, Queens Square who have done caffeine infusions, POTS testing (Postural Ortostatic something or another) This came back as inconclusive. They then put an ICP bolt into my skull at the point where the fringe finishes and joins the main hair. This was in place for a week to test the levels of the csf fluid. This also came back inconclusive. Now they do not know what to do, continue to say that it cannot be csf linked however I still believe it is.


They have diagnosed chronic Migraines. I do not suffer from light sensitivity, noise sensitivity, nausea (other than when the headache is terrible at the end of the day)or any of the other symptoms described by chronic migraine sufferers. My pain is more constant tight burning type pressure which is completely dehabilitating. Driving is horrid as is in the sitting position causing the headache to increase.


I wonder if anyone can help me/us? I am in the UK. I am going for an injection in the nerve at the back of the head on Monday and am dreading it and have read far too many stories where it just doesnt work or has small amounts of success.


I have an apointment to see a guy in Harley street on 19th of March. He is of the Migraine Surgery Centre and does a test where he injects botox between the eyebrows to paralyse the nerve between the eyebrows. If this helps the headaches then they can operate to permanently disable that nerve, no more frowning but that cant be a bad thing can it!


I have also been in touch with a Dr Shevel of South Africa who has a completely new take on constant head pains. I truly believe his approach would work for me and I would love to be able to afford to go and see him but until I go to court with the case I have against the original hospital that performed the botched surgeries I cannot even consider South Africa.


Anyway I hope some of my information will help someone and in the mean time would love some feedback on this nerve injection in the back of the head if possible please.


Thanks for reading


Sarah

Hi Sarah, I am so sorry that you are suffering so much, it sounds horrfic to hear what you are going through.

You do not mention where you are having back of the head injection done.
I presume this is occpital nerve injection?
If so, there is an excellent Neuroscience unit in Queen Square which specialises in this type of steroid+lidocaine injection which has quite good and well tried success rate in reducing pain levels. This can be quite succesful in eliminating/reducing head pain for some people as previously it was reported here.

However the success of the injection depends largely on how skilled the doctor is, since it is not easy to hit the right spot.
Therefore you need a doctor with plenty of practice, someone who has done hundreds and hundrends of these injections - as would be the case in a specialised unit in that hospital. Private clinics often do not have enough of these kind of practice, so bear it in mind.

Sometimes the results are different each time, for the same patient. So, do not get discouraged if the result is not best that first time - it might be better next time. (Or, it can be reverse!).

About botox - again, some people get some relief, and someone here had the operation as well, but they did not get any lasting results from the op, so it was not a success.

ON the whole it seems that the occipital nerve injection give much better result and is not nearly as painful as Botox.

Keep us posted - it is good to share, as we all struggle with issues of pain, so we can support each other here.

Hi
Yes the injection I am having is the GON injection but if I have a leak of csf how can it possibly help anyway? i will let you know how it goes tomorrow.
I have been under the National Hospital for Neurology and Nuerosurgery in Queens Square, London (Dr Matharu) for over a year. They are the ones that have done all the caffeine, pots, and ICP bolt pressure monitoring tests and have now discharged me with a summary of Chonic Migraines. I feel so disappointed that they havent continued to keep me under their care, and have sent me back to Plymouth.
I have been 2 months pain meds free now to prove that the pain is not overuse of drugs, and so when I tell the neuros this Im told, oh well it cant be that bad if you can manage without pain meds!!! I cant win no matter what i do.
I do believe it is worth carrying on the injections route but hold out very little hope that they will help.
I have emailed a Dr Shievink in Los Angeles who seems to be the very top of his field and I hope he will answer me. I am at the point that i would sell my soul to find a cure. I have to live with the constant back pain and nerve pains in my legs but the head is the absolute killer!
Thank you for your support. I really appreciate it.
Sarah

Dear Sarah,

I saw your post late last night on the NDPH forum, and now I'm seeing it here this morning.

I would suggest you post all your history here:

http://braintalkcommunities.org/forums/forumdisplay.php?f=126

This is the best CSF leak forum, and there are some leakers from the U.K. who post there. Folks are very helpful on Braintalk. You will get responses from experienced leakers if you post there.

Leaks can be sooooo very difficult to treat and fix! You feel in your heart that you are still leaking, and it has to be frustrating to be told it is now migraines.

Dr. S is the best neurosurgeon in surgically repairing leaks. It is good that you emailed him.

There is an excellent neuroradiologist at Duke (North Carolina) who also treats leaks. She uses a CT guided dynamic myelogram to look for the leaks and she can patch, using blood and fibrin glue. My daughter saw her two years ago, but to our surprise, my daughter had high pressure rather than low pressure during the LP done there. So she didn't get the myelogram.

Dr. S patches also. Surgery is always a last resort. Both doctors are excellent.

Please join us on the CSF leak forum.

Ronda's Migrainepage is a great place to be for support (this forum).

I don't think it would hurt to do the migraine treatment that you can get in the U.K. Just in case it helps. But usually for a CSF leak, the only thing that helps is to fix the leak.

Even though my daughter's recent ICP monitoring findings were "normal pressure," I still believe she could be leaking. Going back to Duke this summer is a possibility, in my mind.

Cheryl

I am surpirsed that they have discharged you from NHNS, but this might be due to the changes in the NHS system which are happening behind the scenes, lately.

I had this happen to me with another consultant in another hospital.
So I just went back to my GP and insited that I wish to see my consultant again, and can he please write to him to say I want to see him because .... (the reason here).... and alhough GP was not too happy ,he did write and I got another apt again.
You did not mention who is doing injection for you.
It would make sense if you had it done in NHNS since you are already on their books. And they are highly specialised in these injections.

You can also try to call Dr M secretary (ask to be connected directly to her) and talk to her, asking if you can have that injection done, (or another apt) and see what she has to say.
Sometimes you need to be assertive to get what you need, here, specially now that so much is changing.

Cheryl knows much about the subject of leaks, so follow her information as it could be relevant for you.
However, bear in mind that our hospitals are really world class, specially Neurology so research all options well, before you try expensive foreign trips.

BTW make sure that you keep all records of all tests etc from NHNS - in case you need them in the future. This can be useful in case of changes.
YOu are entitled to records here, although they migh charge a small fee for CD etc.

But have that injection, and if it does not work do not get discouraged sometimes second one works better. Keep looking for help, until you find it.

Thank you so so much for your replies and support. It means a lot.
You are definately right that i will continue to follow all avenues here first, predominantly for financial reason.
But I will also continue on the CSF leaks route also because I truly believe that is the problem.
I will keep you all posted.
Thanks again

Hi
I have been this morning for the nerve injections in the back of the head, both sides. Sore now and headache increasing but was warned of this so am resting now and laying down. I have tried a hell of a lot of the meds that were mentioned here and all of them failed to help at all but did give such horrid side effects. It is true that it is extremely difficult to treat low pressure headaches or leak caused headaches.

I spoke to my neuro and have said would he please please not discount the possibility of a leak despite all the results so far, and have asked if he will consider a blind high level blood patch with imaging guidance to aviod any further damage to the dura. he said he will talk to the pain clinic guy so have to wait and see.

He also said he is not discounting referral to Dr S in Los angeles despite this obviously being at tremendous expense to the tax payer in the UK as we have a free national health service but he has said it would be the absolute last option.

So now to rest up and wait and see if the nerve injections work and then take next step. So hoping that something/someone will help me.

thank you for everyones support

I am glad that your injection is behind you. Did you ask what they injected exactly? The best results are if you mix steroid and opiate based painkiller. I belive that some docotrs only inject painkiller, or only steroid - and this is often why the results are poor.
Olso it is important to be able to guide the docotr's needle to that tiny, most painful palce to get it right spot. It can be hit and miss affair, and this is why sometimes, the results are better (or worse) depending if the injection hit the best spot.
I hope that the injection works for you. But if not, do not despair, you can still try it later again.
In the end, if this does not help, at least you will have tried yet another option.

Do not give up trying.
Things change .and treatment improve all the time, slowly perhaps, but we already have so much more help then we had even ten years ago.

Let us know how you are feeling - bruised, I know - this will pass.
But apart from that?

Hi
I didnt ask what they were injecting, how daft of me. ill ring them today to ask as I need to get an appointment follow up before end of march.
Im feeling very bruised and my headache is absolutely awful. But this headache is what i would call a normal horrid bad headache, nothing like my normal headaches which are completely pressure related.
Everyone I spoke to in the waiting room described symptoms similar to each others but nothing like mine. If it works I think it will be a miracle. i asked the dr to fan out the medication he put in. he did both sides. he squeezed hard on the back of my head to try to locate the worst area, but it all just felt very uncomfortable, no pain exactly. My pain is all around my head and behind my eyes and on top of my head, vice like pain. Hot head and red face.
I wont give up though. Im ringing the london hospital today to get a complete copy and breakdown of all my tests etc for the spinal guy and for the neuro in plymouth so hopefully that will help. AND I hold out hope that he will agree to do the High volume blind Blood patch with imaging guidance followed by complete bedrest for x time.
Thank you for your advice and support
Sarah

They injected a small amount of steriods and small amount of anesthetic apparently. No more info than that. head pounding now, was better this am but still bad, now getting worse. Will see how it is later on this afternoon.

I am so sorry that you are still in so much pain - do you feel "bruised" on the site fo the injection? You can help with that bruising by putting some frozen peas (wraped in a towel) near the spot.
Keep shaking them if they are not cold enough. You can freeze them again and again (but do nto eat them once defrosted long time)

I wonder how experinced was the actual doctor who gave you the injection, unless he hits that tiny nerve in the right spot, the injection is not going to have the desired effect. This is why they do not works so well for some people, but the next time it might.
I do hope you are feeling better today, then yesterday.

Hi
Thank you for your interest.
As of yesterday I was pretty much back to normal. My old headache had reappeared as per normal and by the end of the day I had the usual pressure headache and the headache caused by the injections had gone. so all in all the injections had no effect whatsoever.
I have written to my neuro and told him how it went and how I am feeling. i hope he will now continue to investigate the leak probability.
So pretty disappointed but not unexpected.
Sarah