A TREATABLE CONDITION TOO IMPORTANT TO MISS

[Gingergrrl]

I also did a spirometry years ago & it was nowhere close to the force of trying to inflate that thing, as a spirometry tube is actually designed to be exhaled into, a water bomb is not however if someone was very unlucky it could conceivably happen from that.

Thank you for answering my questions and explaining this @bombsh3ll. I had horrific side effects from the spirometry tests and with one of them, I almost ended up in the ER (back when I was very ill prior to my treatments). It had felt as if my heart had been squeezed and someone kicked me in the lungs/chest and I couldn't breathe normally for days. But it was definitely different than your experience and I don't think it was from the force of the valsalva (like in your case) vs. that my lungs & diaphragm were simply too weak to do such a test back then.

Also... what is a water bomb? I Googled it but still was not sure? Is it a balloon filled with water?

I am glad you too found something treatable. That is why I want to share, even if it only affects a small number of people.

I agree and have no doubt that sharing your story will help others in the future.

Regarding NHS treatment, I live in Scotland where the NHS only automatically funds treatment in your own area, & there are no specialists that treat it where I live. You have to appeal for funding to see a specialist out of area, & it is likely to be refused if there is someone in your area who has never done the procedure before, but is willing to have a go.

I hope that you can get the proper treatment that you need and please keep us posted.

 

[bombsh3ll]

Thanks yes I will do! And yes a water bomb is a water balloon. It is absolutely not designed to inflate by mouth!

B xxx

 

[Tella]

Yes, he is a neurologist in Stoke. He is on the board of the CSF leak association and co-wrote a lot of its information articles. I found him very knowledgeable & up to date with the latest research. He also examined me properly & genuinely seemed to want to help.

Since becoming unwell, most of my experience with healthcare professionals has not just been fruitless but dehumanizing, & it is rare to find someone with that level of knowledge & compassion.

B xxx

Hi, sorry I can’t figure out how to send a message to u. I wanted to see Dr Ellis but I’m severely ill. He said he doesn’t have the MRI equipment in his area so can’t refer me to a scan. How did u do a scan? Are u severe? How did u manage to travel to appointments? As I’m looking to have a consultation and a scan in one-two days as I’ll be traveling from another town. So I guess I won’t go for Dr Ellis. Did they find a location for your leaks? Will u get treatment? Sorry I’m lost on this thread and forum and can’t find answers so sorry if u already said all the details...
PS. There are some specialists in Scotland I can see on the leaks website if that’s of any help to u. Thanks a lot

 

[Mary]

Hi, sorry I can’t figure out how to send a message to u.

Hi @Tella - you should be able to send a message now, you've been given full membership privileges. To send a private message, look on the top right hand side of the page and you'll see "Inbox". Click on that and you'll see "start a conversation" at the bottom of the pop-up menu.

 

[bombsh3ll]

@Tella hi I am sorry you are also unwell.

I was able to get the scan I needed on the NHS close to where I live. I got a GP referral to a neurologist to be investigated for a CSF leak, by printing out relevant information from the CSF leak association website & highlighting relevant symptoms, the fact my illness was valsalva induced, & the fact I have a diagnosed connective tissue disorder.

The MRI brain and spine scan with contrast was done supine at a local NHS hospital.

It was read as negative initially, but a) Dr Bolognese in the US felt it was suspicious for a CSF leak when I sent it there for CCI screening and b) even if this had not been the case, Dr Ellis is willing to recommend treatment with blood patching based on strong clinical history, given that MRI is positive in only 70-80% of cases, which goes down as time increases since onset (I have had it over 5 years).

I am able to travel to hospital appointments in the car with my husband taking me, & use a wheelchair. I am largely housebound except for medical appointments and can only stand for about a minute.

If you suspect a leak, getting referred to your local neurology department like I did is probably the best first step, then you can get a scan & take it from there.

There is one specialist in Scotland, but he is also outwith my local health board area so the funding barrier is the same unfortunately.

I am currently trying to organize and fund a blood patch privately, whilst awaiting (35 weeks estimate) a further neurology appointment in my area to start the application process for out of area funding.

If you live in England or Wales however, the NHS will automatically pay for you to see your chosen specialist even if this is not local to you, provided you are able to travel.

Best wishes,

B xxx

 

[Tella]

@Tella hi I am sorry you are also unwell.

I was able to get the scan I needed on the NHS close to where I live. I got a GP referral to a neurologist to be investigated for a CSF leak, by printing out relevant information from the CSF leak association website & highlighting relevant symptoms, the fact my illness was valsalva induced, & the fact I have a diagnosed connective tissue disorder.

The MRI brain and spine scan with contrast was done supine at a local NHS hospital.

It was read as negative initially, but a) Dr Bolognese in the US felt it was suspicious for a CSF leak when I sent it there for CCI screening and b) even if this had not been the case, Dr Ellis is willing to recommend treatment with blood patching based on strong clinical history, given that MRI is positive in only 70-80% of cases, which goes down as time increases since onset (I have had it over 5 years).

I am able to travel to hospital appointments in the car with my husband taking me, & use a wheelchair. I am largely housebound except for medical appointments and can only stand for about a minute.

If you suspect a leak, getting referred to your local neurology department like I did is probably the best first step, then you can get a scan & take it from there.

There is one specialist in Scotland, but he is also outwith my local health board area so the funding barrier is the same unfortunately.

I am currently trying to organize and fund a blood patch privately, whilst awaiting (35 weeks estimate) a further neurology appointment in my area to start the application process for out of area funding.

If you live in England or Wales however, the NHS will automatically pay for you to see your chosen specialist even if this is not local to you, provided you are able to travel.

Best wishes,

B xxx

Thanks a lot! Seeing that it’s hard for me to travel, do u know if I can send my mri scan results to Dr Ellis or do u have to see him in person?
Can I get an upright mri done to rule out both leaks and cci at the same time? Or a supine one but with wedges behind u (I’ve been told by Dr Gilete I can have that one done instead of the upright one for cci)?
Once I have the scan done, is there any doctor who can prescribe me patches remotely if needed so I don’t need to see them and then go for patches too? Are they expensive if done privately? I’m in England so if I do the scan privately and a consultant sees the leaks, can I do patches on the nhs? Just thinking of the quickest way and where I don’t travel much here and there...
Am I right in thinking that they didn’t see leaks on your scan but as many scans miss them and cos of your symptoms u are planning to do patches? Have u managed to find a doc for that? Thanks again !

 

[Tella]

@Tella hi I am sorry you are also unwell.

I was able to get the scan I needed on the NHS close to where I live. I got a GP referral to a neurologist to be investigated for a CSF leak, by printing out relevant information from the CSF leak association website & highlighting relevant symptoms, the fact my illness was valsalva induced, & the fact I have a diagnosed connective tissue disorder.

The MRI brain and spine scan with contrast was done supine at a local NHS hospital.

It was read as negative initially, but a) Dr Bolognese in the US felt it was suspicious for a CSF leak when I sent it there for CCI screening and b) even if this had not been the case, Dr Ellis is willing to recommend treatment with blood patching based on strong clinical history, given that MRI is positive in only 70-80% of cases, which goes down as time increases since onset (I have had it over 5 years).

I am able to travel to hospital appointments in the car with my husband taking me, & use a wheelchair. I am largely housebound except for medical appointments and can only stand for about a minute.

If you suspect a leak, getting referred to your local neurology department like I did is probably the best first step, then you can get a scan & take it from there.

There is one specialist in Scotland, but he is also outwith my local health board area so the funding barrier is the same unfortunately.

I am currently trying to organize and fund a blood patch privately, whilst awaiting (35 weeks estimate) a further neurology appointment in my area to start the application process for out of area funding.

If you live in England or Wales however, the NHS will automatically pay for you to see your chosen specialist even if this is not local to you, provided you are able to travel.

Best wishes,

B xxx

Sorry another question; are u able to sit up straight? When my head isn’t flat I just feel dizzy and weird. And the last few days I have increasing neck pain too out of nowhere which is scary a bit as now anytime I am not flat or stand up, my neck just hurts a lot! Dunno if it’s all the weird cfs symptoms or actuallly leaks now (which are caused by the cfs anyway I’m sure, infection getting to the spinal cord etc)...

 

[Tella]

@Tella hi I am sorry you are also unwell.

I was able to get the scan I needed on the NHS close to where I live. I got a GP referral to a neurologist to be investigated for a CSF leak, by printing out relevant information from the CSF leak association website & highlighting relevant symptoms, the fact my illness was valsalva induced, & the fact I have a diagnosed connective tissue disorder.

The MRI brain and spine scan with contrast was done supine at a local NHS hospital.

It was read as negative initially, but a) Dr Bolognese in the US felt it was suspicious for a CSF leak when I sent it there for CCI screening and b) even if this had not been the case, Dr Ellis is willing to recommend treatment with blood patching based on strong clinical history, given that MRI is positive in only 70-80% of cases, which goes down as time increases since onset (I have had it over 5 years).

I am able to travel to hospital appointments in the car with my husband taking me, & use a wheelchair. I am largely housebound except for medical appointments and can only stand for about a minute.

If you suspect a leak, getting referred to your local neurology department like I did is probably the best first step, then you can get a scan & take it from there.

There is one specialist in Scotland, but he is also outwith my local health board area so the funding barrier is the same unfortunately.

I am currently trying to organize and fund a blood patch privately, whilst awaiting (35 weeks estimate) a further neurology appointment in my area to start the application process for out of area funding.

If you live in England or Wales however, the NHS will automatically pay for you to see your chosen specialist even if this is not local to you, provided you are able to travel.

Best wishes,

B xxx

Me again, sorry! Do u think any doc would be willing to try patches on me based on my symptoms without the scan? As I know contrast can wreck your health even further so I wanna avoid it if possible....but there’s no point doing a scan without contrast...thanks

 

[bombsh3ll]

Hi I believe all doctors would want a scan first just to rule out anything else - one person I spoke to had signs of HIGH pressure on a MRI - but Dr Ellis at least is prepared to patch based on very suggestive symptoms if the scan is normal.
You would need to see him in person to get a treatment recommendation. An upright scan is not used by Dr Ellis, it should be supine & preferably with contrast.
If your scan showed signs of a leak you may be easily able to obtain treatment on the NHS depending on the knowledge level of your local neurologist.
There is no concern with gadolinium contrast used for MRI's, it is not like the iodine for CTs which made me very ill. Gadolinium you don't even know you've had it.
I would say def push for a supine scan with contrast on the NHS. Not only would this save you a lot of money but these are 3 tesla, private ones are often only 1.5.
B xxx

 

[Tella]

Hi I believe all doctors would want a scan first just to rule out anything else - one person I spoke to had signs of HIGH pressure on a MRI - but Dr Ellis at least is prepared to patch based on very suggestive symptoms if the scan is normal.
You would need to see him in person to get a treatment recommendation. An upright scan is not used by Dr Ellis, it should be supine & preferably with contrast.
If your scan showed signs of a leak you may be easily able to obtain treatment on the NHS depending on the knowledge level of your local neurologist.
There is no concern with gadolinium contrast used for MRI's, it is not like the iodine for CTs which made me very ill. Gadolinium you don't even know you've had it.
I would say def push for a supine scan with contrast on the NHS. Not only would this save you a lot of money but these are 3 tesla, private ones are often only 1.5.
B xxx

Thanks. Dr Gilete recommends supine with extension (they put wedges behind your back)-do u know if this one is ok? If not, can I get a standard full spine and brain mri with contrast by myself and then show it to my preferred doc? Or do they have to order some special one? Thanks

 

[bombsh3ll]

Thanks. Dr Gilete recommends supine with extension (they put wedges behind your back)-do u know if this one is ok? If not, can I get a standard full spine and brain mri with contrast by myself and then show it to my preferred doc? Or do they have to order some special one? Thanks

I don't know about supine with extension, it may be ok provided contrast was used & preferably the whole spine was done too, but it would be best to check with whichever neurologist you planned to see before spending money.

Yes you absolutely could get the supine contrast MRI then send it anywhere you wanted, it is pretty standard. This was easy to access on the NHS though for me & would probably be the best option if you have symptoms/risk factors suggestive of a CSF leak.
Even if it is then reported negative you can always send it to a specialist for a second opinion, as signs of a leak can be subtle and are sometimes missed by the NHS.

B xxx

 

[Tella]

I don't know about supine with extension, it may be ok provided contrast was used & preferably the whole spine was done too, but it would be best to check with whichever neurologist you planned to see before spending money.

Yes you absolutely could get the supine contrast MRI then send it anywhere you wanted, it is pretty standard. This was easy to access on the NHS though for me & would probably be the best option if you have symptoms/risk factors suggestive of a CSF leak.
Even if it is then reported negative you can always send it to a specialist for a second opinion, as signs of a leak can be subtle and are sometimes missed by the NHS.

B xxx

Thanks. Do u know if Dr Gilete deals with leaks too? As I’d want to deal with one doc for both cci and leaks if possible. Can he diagnose them?
Are u still considering surgery or will see after the blood patch? It all seems scary to me!

 

[humanrising]

my tiny brain is toast so forgive me if it wasn't on this thread.... but I think it was or it was on someones post to read here.....anyway
I believe I have a connective tissue disorder due to my long history of neck problems and my recent labral tears in both hips and possibly my shoulder this last year.
what I learned here that was new to me, that Floroquine antibiotics can cause ligament and or connective tissue breakdown.
I had posted a thread awhile ago about so many of us being world travelers and wondering if this has added to us possibly getting ill. So maybe the 20 plus rounds of antibiotics I took on my travels added to making my car wrecks and my hammock flip recovery harder. I took antiparasitics but I also took loads of Cipro in my travels as well at home since I am allergic to penicillin.